Welcome to Dreambook, a nifty new free service from:
New Dream Network, Dreamhost, and Dreamservers!If you have a minute, please sign my Dreambook too!
| Name: | Braeden |
| E-mail address: | braeden@juno.com |
| Homepage URL: | http://www.galeon.com/lalanamodel/percocet/cheap-percocet.html |
| Comments: | Our partners : tramadol withdrawal is about tramadol withdrawal... online pharmacies is about online pharmacies... I love the site!!! Keep up the good work. Thanx for all the pics and info! our site webmaster. |
| Name: | Misty and Robert McMahan |
| E-mail address: | mistymc42182@aol.com |
| Comments: | Just thimking of my little angles.I am a mother of two menkes babies. I had my first son Nathaniel Nov of 2002. He lived for 3 yrs. Then in 2007 I had my son Camron he started Dr Kalier's cooper injection's at 7 days old .We go every 6 months to see him. He's a healthy,and a little behind but he's standing and trying to walk .He's say's 10 words and smile's he does moore then we could ever dream of and we thank god. No matter the out come we thank god for both of our boy's and are honored to be there parent's.
God Bless |
| Name: | Amy |
| E-mail address: | amy@msn.com |
| Homepage URL: | http://wellst.isuisse.com/cialis/ |
| Comments: | I am so excited to have been invited to this site! It is wonderful, and I see, a lot of work went into it! I look forward to meeting you all in cyberspace! Visit ventolin ... buy levitra online ... and if anyone wants to contact me...please do! |
| Name: | Cassandra |
| E-mail address: | xxautumn_breezexx@yahoo.com |
| Comments: | I'm so glad i've found ur site because i'm having a difficult time finding others that have dealt with menkes. My son was diagnosed with menkes a week ago and he is 9 months old. I am hoping a praying that God will deliver him from this illness. If anyone has any suggestions please feel free to email me because i would love to hear from u! |
| Name: | Joanne |
| E-mail address: | softjojo@msn.com |
| Comments: | my nephew died at 18 months from Menkes....He was truly a gift and whilst his life was short he gave us all such inspiration...Jake will live on and through him more will be discovered...R.I.P Jakey Boy xx |
| Name: | Wendi |
| E-mail address: | wendiktx@yahoo.com |
| Comments: | Dani & Keith:
Thank you so much for setting this website up. I had 2 boys, Brantley & Wesley, that had this disease. I know what it is like to have to suffer through watching your children suffer. Though seeing his pictures, he looks like he had a very happy life while he was with you. I now have 2 boys who do not have the disease, so there is light at the end of a very dark tunnel. Michael & Gabriel (named after the awesome angels of the Lord). They are my angels. And I know that I am blessed in every way to have them. There is a saying that God chooses special parents for special children and I believe it. You may contact me at any time, as well as other parents who have had or who have children with Menkes Syndrome. Wendi |
| Name: | Jen Trumbly |
| E-mail address: | Trumbly5@hotmail.com |
| Comments: | Hello everyone!! Our sons 2nd Birthday will soon be coming up. His name was Rener This is only the second time I have visited this site. When Rener was born June 3 2004 he was such a beautiful boy. We had Rener in our lives for 134 days and he became an angel October 16th 2004. This is a great site and if anyone would like to e-mail me I would really like to hear from them. At this time this is all I am able to type on our son.
Signing off for now-- jen |
| Name: | Kim Mitchell |
| E-mail address: | kmitchell@ericksonmail.com |
| Comments: | I had a son with Menkes Syndrome.He was born on March 31,1991,he died on October 9,1992.I still try to keep up on any information they might find on this.My heart goes out to every family that is going through this.Remember to be strong. |
| Name: | miranda |
| E-mail address: | holtroprvs@hotmail.com |
| Comments: | hello,
i've had 2 brothers with menkes.they are died before i was borned.i don't have the wrong X chromosome but mabey my younger sister have it. ihope i can find people in holland. i wish you and all other people with menkes the best |
| Name: | Sarah |
| E-mail address: | sjh_18@hotmail.com |
| Comments: | My deepest sympathies to you and any families with Menkes sufferers who see this message. I had no idea when I undertook Menkes as research topic for my uni course that I would find it to be such a horrificly debilitating disease. Thoughts and prayers for all the children in the world with Menkes. |
| Name: | Joanna |
| E-mail address: | - |
| Comments: | Hello,
I am 14 years old and I am in 9th grade. My biology class had to pick a disease to study out of a jar without looking and I ended up with Menkes Syndrome. When I came apon your touching website and read about Justin and all those children, my heart was breaking and I couldn't imagine how horrible it must be. I give my blessings to you and all the other families out there who had someone pass away from the Menkes Syndrome. <3 God Bless <3 Joanna |
| Name: | Jackie Cheal |
| E-mail address: | Jackie.Cheal@dadhc.nsw.gov.au |
| Comments: | Hello! I am a Clinical Nurse Educator in a large residential service in Sydney Australia. We have a client on one of the units I work in who has Menkes Syndrome. He is 37 years old and has recently become very ill (following a bout of severe seizures). I came across your website while tying to obtain more information on the syndrome. I can tell you that I was overwhelmed at the information you have provided from both a clinical and personal perspective. I feel priveledged to have found this site and congratulate you all for taking the time to share your experiences with the world. Thankyou very much.
Jackie |
| Name: | Daniel Ice |
| E-mail address: | hiimdaniel@yahoo.com |
| Comments: | While I was suppose to be doing a research project on Parkinsons, I decided that instead I would go with the disease that has dealt the hardest blow to my family. Menkes. Two of my brothers have passed from it, as well as a cousin. I've held so much hostlity in my heart over it, mostly towards God. Your site brought me to tears more than a thousand times. I admire the strength that you have, and just want to say thanks. I know that Joshua, Alex, and Andrew are all up there playing right next to Justin. |
| Name: | MARYELLEN |
| E-mail address: | mepkgrau@warwick.net |
| Comments: | HI, MY HEART GOES OUT OTO A LITTLE ONE BORN WITH ANY MEDICAL ILLNESS. BEING IN THE MEDICAL FIELD, I TRUELY BELEIVE THAT THE LORD GIVES THESE SPECIAL LITTLE ONES TO SPECIAL PEOPLE WITH EXCEPTIONALLY BIG HEARTS,
MY SISTER LOST HE SON WITH MENKES 17YRS AGO. HE WAS COMPLETELY HANDICAPPED, WITH FEEDING TUBE, FOLEY,HIS BONES WOULD BREAK EASILY WHEN YOU SO MUCH AS TRIED TO TURN HIM. OF COURSE BACK 17YRS AGO, NOT TO MANY DOCTORS EVEN KNEW WHAT MENKES WAS. IT TOOK ALMOST ONE YEAR,BEFORE MY SISTER KNEW WHAT WAS WRONG, AND CHILDRENS HOSPITAL IN PHILLY PA, DISCOVERED IT IN LESS TEN A DAY. TWO YEARS AGO THIS MARCH 24, MY SISTER DAUGHTER, HAD A SON, AND DURING HER PREGANCY WAS WATCH AND MONITORED VERY CLOSELY, KNOWING SHE WAS CARRING A BOY. AFTER HE WAS BORN, THE DOCTOR DECIDED TO SEND HIS BLOOD TO MARYLAND INSISTUTE HOSPITAL,WHERE THERE IS A SPECIALIST WHO DEALS ONLY WITH MENKES, AND HE DICAVERED THAT THE BOY HAD IT ALSO,MY NIECE HAD TO GIVE HIM TWO SHOTS OF COPPER EACHDAY TILL HE WAS ONE, AFTER THAT TILL THIS DAY SHE GIVE HEM ONE INJECTION EACH DAY, HE GOES FOR VISIT TO MARYLAND EVERY THREE MONTHS,DURING WELL, CRAWLS AND STANDS BY HIMSELF, AND HOPEFULLY WILL BE ABLE TO WALK. MODERN MEDICINE AND TECHINALLY IS WONDERFUL. AND HE IS MY SWEET PEA. MY NIECE IS REALLY UP ON ANYTHING TO BE KNOWN ABOUT MENKES. GOD BLESS YOU SPECIAL PEOPLE OF THESE SPECIAL ANGELS. |
| Name: | Jessica |
| E-mail address: | pink_starburst_09@yahoo.com |
| Comments: | I am 15 years old and am in 9th grade. In biology we had to draw a disease ou to of a hat and i choose menkes disease. i came to your site to find info on the diseasei had never heard of but when I read justins story it was heart breaking.i truley hope that everyone who knew the sweet young child has found some peace and is doing alright.
sincerly, Jessica |
| Name: | Adrine Dagbashyan |
| E-mail address: | adagbashyan@yahoo.com |
| Comments: | Dear Dani, Keith and Family,
My name is Adrine and I am 17 years old.. I came upon your site in hopes of finding some information for my Menkes syndrome project but i found something so much more. It was really hard for me to go through your site because i adore and love children with every inch of my heart so seeing all these little angels on your site really and truly broke my heart. I am deeply sorry for all the pain your family and other families have faced with your innocent angels. Your story has pierced through my skin and touched my soul and i am very grateful that you are helping other parents with knowledge about this syndrome. Thank you for all you offered to these families. You will forever stay in my heart.... |
| Name: | kerry hansen |
| E-mail address: | kerryhansen187@yahoo.com |
| Comments: | Our son was diagnosed with menkes in may and confirmed with test results from denmark in october and my wife and i are trying to find any info to add to give us a little more hope for Xaden (the X makes a Z sound)who was born july 23 2004 if anyone has any info please feel free to email us.We also signed on to the chat so messages can also be read there
Thank you Kerry & Elizabeth Hansen Alberta Canada |
| Name: | Sharron |
| E-mail address: | slimsharron@hotmail.com |
| Comments: | Dear Dani, Keith and family
I'm thinking of you all and came across this site by chance. I am also looking for answers on the net. I hope you find comfort in carrying dear little Justin around in your heart and mind wherever you may go. He is so cute and adorable. I really feel for you. |
| Name: | Krystal |
| E-mail address: | kryspark@bellsouth.net |
| Homepage URL: | http://www.caringbridge.org/ms/candaceangel |
| Comments: | I found your site by a link on Lance's site. I had a cousin to passed away on Feb. 18th 2005. She had a disease called Krabbes Leukosdystrophy. She was 13 months and 2 days old. She was diagnosed when she was 4 months old. She never crawl, sit up, or speak but she was a special angel. She touched lot of lives. I feel for your family for your loss of your beautiful son. |
| Name: | Kim Patterson |
| E-mail address: | kpatterson75@carolina.rr.com |
| Comments: | I have had two boys with menkes. Jacob passed away 5 years ago the other was not a full term pregnancy but he was positive with the disease. Jacob was 17 months old when he died. I always felt like I was the only one out there who had a baby with menkes and when I found this web site I was so suprised to see how many children there were out there and that I wasnt the only one going through this. I had such a hard time dealing with his death to the point of almost divorcing my husband,I just felt so lost and then I found Jesus and he has given us a whole new life. I just want to encourage anyone out ther who is dealing with this to please turn to him and he will give you strength to pull through. I don`t mean to preach at anyone, that`s just what helped me through this situation. If anyone would like to talk or just need someone who knows what they are going through, please feel free to write me at kpatterson75@carolina.rr.com. |
| Name: | Julia |
| E-mail address: | webbie6@yahoo.com |
| Comments: | Hi...I have a son with Menkes Disease he is doing very well. He is on Dr. Kaler's copper histadine protocol. He is crusing along furniture and says momma and nana. He was diagnosed when he was 1 month old. He will be 2 on March 24th. I also had a rother who had Menkes Disease, he passed away in 1990, he was 3 years old....feel free to e-mail me or if u have yahoo messenger add me to ur contacts. I am intrested in talking to other parents that deal with the same issues. Thank You for sharing ur son's story and god bless!! |
| Name: | Liz |
| E-mail address: | eneprice@comcast.net |
| Comments: | Wonderful tribute to your son and to all the other children with Menkes. We had a son, Adam who died 2 years ago at 4 months from an unknown mitochondrial disease. I remember him being tested in the hospital for Menkes and hoping that was it - at least there would be a name for what he had! His site is: www.caringbridge.org/ma/bundle - Username: "together", Password: "forever". |
| Name: | Carla Ellis |
| E-mail address: | sweetnaime@aol.com |
| Comments: | I just wanted to tell you how touched I am by your web site and how much I admire you for being able to handle all you have been through so well. I lost a parent three years ago and it is still very hard for me to even talk about it with close friends and family. I am a medical student studying metabolic disorders (what brought me to the site) and I have learned more from this site than from most of my textbooks. Keep up the good work educating families and know that your true angel is smiling down on you every day! |
| Name: | Katie |
| Comments: | I would like to thank you for letting me educate others with this disease. The information on your site has been extremely useful for such a rare syndrome. Your son was truly an angel and I couldn't even begin to imagine what your family has been through. You must be an amazing mother. |
| Name: | kayla |
| Comments: | i did menkes for a biology project and didnt fully understand the lives it affects and all of these beautiful childrens lives its taking .. until now .. thankyou for letting me copy the pictures to try to educate the rest of my class on this horrible syndrome. it hurts me to think that many more innocent children will have their lives taken from this disease.
its a beautiful site it made me cry. |
| Name: | Auntie (Clarissa) |
| Comments: | Hello My Angel!!!
Just wanted to sign your book to let you know that you are always in my heart. I miss you so much. I know now you are playing and running and doing those things that you could never do before and that thought of happiness keeps me going. Auntie loves you with all her heart. |
| Name: | yolanda torres |
| E-mail address: | xenaida2@yahoo.com |
| Comments: | my son had menkes to he was diagnosed in 1998 when he was 4mths. old he was a strong little boy just like your son justin he passed away in february of 2000. its been awhile I hope you stay strong for your other children and your self I know its hard but hes in a better place feel free to email me if youd like much love your new friend yolanda from colton ca. |
| Name: | kevin hasprey |
| E-mail address: | kevin.hasprey@ntlworld.com |
| Comments: | hello its been a long time since i wrote i hope things are well we pased a milestone a few weeks ago Thomas was 18 in August i hope you are all well lovefrom all of us here in the uk. |
| Name: | Tom, Janne & Rasmus |
| E-mail address: | jato@it.dk |
| Comments: | Hi..!
We just wanted you to know that we are still following your website.... We saw Rasmus in your friends picture part. You wrote he is turning 16 years... Now he is turning 18 this March 16. We last wrote yor guest book May 6th 2002. We just like to see a good website with so much information of the disease. You dare doing a great job. Best wishes for you and your family... Tom |
| Name: | Sue |
| E-mail address: | sue@sharkyspage.com |
| Homepage URL: | http://sharkyspage.com |
| Comments: | My heart goes out to you. Thank you for sharing Justin and such important information with the world. God bless you and your family. |
| Name: | Nanette |
| E-mail address: | dalvenia@aol.com |
| Comments: | Came upon your site when doing some research on Menkes. My cousin (and close friend) just lost her "almost" three year old son in June. He had Spina Bifida, Rib Agenesis, Club foot, a trach and one lung. Although he had a multitude of medical issues, Josiah was one of the sunniest children I have ever met. His smile beamed across a room of people and made everyone smile and laugh at his joy of life. His passing was unexpected as he was doing quite well and thriving, so we are still in grief of the his loss from our family and lives. My heart goes out to you and your family at your loss and God's gain. From what my cousin, Lisa, and her family went through trying to make sure Josiah received the best and timely care, insurance issues, trying to make sure "peter' got paid, along with "paul" and then dealing with the crisis' that occurred on a fairly regular basis, I feel for all who have to have a with health issues in their families. It is rough, but as Lisa and Gary (Josiah's parents) said.that they wouldn't have traded a single second away, as the short time they had with Josiah was a true joy and experience of love.
May God's grace and love shine on thee for sharing your experiences, strength, wisdom and love on these pages for others. |
| Name: | Glenn & Pam Rees |
| E-mail address: | grees@ccrtc.com |
| Comments: | Our fourth son (Micah) was born Nov.25, 1981. He passed away on Nov.20, 1999.
It was quite an unusual situation. I know most would really wonder how a boy with Menkes could live to be almost 18 years old. But this is true. You would probably be surprise that there is a Menkes boy that is living now in his twenty's. He does have Menkes but he too is a rarer case. It is a very long story that only my wife can tell. We live in Coatesville, IN - just west of Indpls. We were founding members of a support group that primary worked with families and doctors. You can image that 25 years ago little was known about Menkes. Our group, Corp for Menkes Disease, were the first to work with Dr. Dankes, Dr. Kaler and many others over a five year period. There were members from Oregon, Ohio, Indiana, Kentucky, Pennsylvania, Wisconsin and several more. In reading many of the posting on the Yahoo Group, many of these same problems are still around. The sorry fact is that it seems that once these boys of ours pass away, it is hard to keep together with the other parents with what is happening in medicine for Menkes. We sympathize with you over the difficult times you are having and hope that more progress will be made in understanding and preventing it in the near future. Glenn |
| Name: | Josh |
| E-mail address: | zapyap21@yahoo.com |
| Comments: | I will keep you and Justin in my prayers. I came to your site for information of the menkes disease for a school report. I am glad that you have put this information out there. Thanks again,
Josh |
| Name: | Marianne |
| E-mail address: | marianne.berthon@libertysurf.fr |
| Comments: | really sorry for your son... Your site is great and I learnt a lot! |
| Name: | Rachael |
| E-mail address: | rachaelsimone23@aol.com |
| Comments: | Hello, I just wantd to sy that I stumbled upon your site and I have cried all the way through it. I'm so very sorry what has happened to your family. I know that losses really hurt. I hope you stay strong and continue to help keep people aware of Menkes Syndrome, because one day there may be a cure. Your a very strong woman. God Bless you and your family. |
| Name: | Peggy |
| E-mail address: | pebe@satx.rr.com |
| Comments: | Thank you, Dani, for all the information I have gained tonight reading about your precious little son. I am a medical foster parent, and with two hours'notice this afteroon, had a little boy with Menkes placed in my home. Xzavier was a year old just four days ago and was diagnosed two months ago. I had never heard of this Syndrome until today. You have helped me so much already to understand what this little baby is dealing with. God bless you and your family. Justin's story will continue to help people for a long time to come, just as it has helped me and Xzavier today. |
| Name: | Dora |
| E-mail address: | doraf@hotmail.com |
| Comments: | I found your site and I just wanted to say I'm sorry for your loss. I have been there myself, I had a son that was born april 21 1973 and we lost him in oct 9 1976. My husband and I were lost because we had never heard of this . And back then there was not much information about it , my son's name was Sonny and he truly was,my sushine, people have ask me how did you get thru it and all I can say is how could you not when you had those beautiful little eyes looking up at you he was our special child from God. My sons dr. didn't have very much information on this so they asked us to do genetic counseling and testing so we did, hoping it might make a difference in someone else life. We were living in Tacoma Washington at the time so we went to Seattle to do skin test and the whole nine yards because,it was so important that maybe they could get more information on it. So you can imagine how good it makes me feel to be able to talk to some one that knows what I have been thru . God Bless you and hope you have a blessed day. |
| Name: | Marty |
| E-mail address: | mwest3@vcu.edu |
| Comments: | I am a nurse who is working with a family with 2 boys with Menkes. Your site was very helpful in seeing things from the parent's perspective. Thanks for the time it took you to do this-the information is very helpful. |
| Name: | victoria |
| E-mail address: | ------------------------------- |
| Comments: | i was doing a project in science class on menkes and i realized how horrible the syndrome was. i am very sorry for what happened to your son and i hope you keep this website open for all of america to see. |
| Name: | Allie Segrest |
| E-mail address: | Berryjags@aol.com |
| Comments: | I love the site. It made me cry. God bless you. |
| Name: | lesley biggs |
| E-mail address: | lesley_biggs2001@yahoo.co.uk |
| Comments: | just had to say hi I am a mother of two menkes boys myself Asa my first son woulda been 8 this january coming and Kai my second son who woulda been 2 tomorrow I pray that you will find comfort in the fact our boys were made special, and are now angels in the kingdom of the lord, god bless you, lesley x |
| Name: | Claire Hicks |
| E-mail address: | clizzyhicks@comcast.net |
| Comments: | i have just finished reading the web site and i have to say i cried almost the whole way through. A person that has signed their name below Alan Harned is my best friend who sent this in an e-mail. I agree with him when he says all your children were blessed. Although they were taken way before their prime god had a bigger plan for them. We may not be sure if it was to be with him or to help educate others about the disease, but they are definitely in a better place. it is hard to lose someone you love, but you must carry on as if they had never left. may god strenghthen you throughout your many trials and tribulations. you and your families will be on my prayers for many years to come. |
| Name: | Claire Hicks |
| E-mail address: | clizzyhicks@comcast.net |
| Comments: | i have just finished reading the web site and i have to say i cried almost the whole way through. A person that has signed their name below Alan Harned is my best friend who sent this in an e-mail. I agree with him when he says all your children were blessed. Although they were taken way before their prime god had a bigger plan for them. We may not be sure if it was to be with him or to help educate others about the disease, but they are definitely in a better place. it is hard to lose someone you love, but you must carry on as if they had never left. may god strenghthen you throughout your many trials and tribulations. you and your families will be on my prayers for many years to come. |
| Name: | phillip s |
| E-mail address: | xXmxriderXx@aol.com |
| Comments: | this is really sad it touched me i was doing a report and saw all the pics |
| Name: | DEBBIE HAVILAND |
| E-mail address: | BOOBOO71891@JUNO.COM |
| Comments: | I HAD A SON STANLEY.BORN APRIL 21 1989 HE PAST AWAY IN MAY OF 93 ON MOTHERS DAY, I ALSO HAVE A 13 YR OLD DERICK AND IS DOING VERY WELL. TWO OUT OF FOUR SON'S I HAD WERE AFECTED BY MENKES. MY SISTER ALSO HAD THREE BOYS AND ONE WAS EFFECTED BY MENKES HE WAS BORN IN 1989 HE WAS TWO MONTHS OLDER THEN MY OLDEST THAT HAD PAST AWAY HE WAS HERE FOR A SHORT TIME HE PAST AT 18 MTH'S |
| Name: | Lisa Hanneman |
| E-mail address: | hanneman_630@msn.com |
| Comments: | I have a 9 1/2 year old son, James, with Menkes Syndrome. I haven't looked up anything on the internet for years. I was so surprised to find your site. James also had a Grandma named Dottie. James' father and both paternal grandparents died this year so I have James alone now. He has a little sister and brother who met him for the first time two weeks ago. I am so happy to have my James. He has taught me more in his 9 years than I could have learned in a life time about love and acceptance. I cherish him every day. Thank you so very much for your website. |
| Name: | Michael Humphrey |
| E-mail address: | Lynnmikd@Quixnet.net |
| Comments: | I wanted to thank you for the information about this disease. I am an RN with little knowledge about this condition. My wife and I have a couple at our church and their grandson was diagnosed with this disease. My wife and I both work in a emergency room where this little child will be going. I am getting information so I can share it with the other nurses and physicians. I hope they can better understand this rare disease and be able to take care of this child. Thank you. Our prayers are with you. Mike and Rinae Humphrey |
| Name: | Laura |
| E-mail address: | LauraGSal@aol.com |
| Comments: | This web-site touched me to the bottom of my heart and soul. I had a brother who had Menkes and now have a nephew who is fighting everyday with this. I don't understand why. Why? Why babies? I sit here with all the memories of my brother and thoughts of my nephew and it hurts so bad! Words cannot describe the pain. My family has been stricken with Menkes for 4 generations on my mothers side of the family and we have been poked and prodded throughout the years. I can only pray the answer comes soon to help all the little babies, they are TRUE angels. |
| Name: | Elsa Pickmere |
| Comments: | Your site truely touched me i believe that your whole family is very brave. I am studying nursing at university in Australia and i am doing an assignment in Menkes, this website have been very helpful to me and i have learnt a great deal. Thnkyou |
| Name: | WEB-ZAPPER |
| E-mail address: | saxo03@web.de |
| Homepage URL: | http://www.sexevents24.de |
| Comments: | Cool Page, visit me -> www.sexevents24.de -> Free Erotic-Chat |
| Name: | Sandra Cann |
| E-mail address: | Scann100@hotmail.com |
| Comments: | God Bless you and God bless us all.. for we are the ones who suffer with our children and their illnesses. |
| Name: | Nicole |
| E-mail address: | NicoleMcbrian@hotmail.com |
| Comments: | you have been very blessed to be able to put up this site and your information will touch others. god never gives you anything you can't handle. i believe our children are our true angels and even from heaver they look over us and are always there when we need them. god bless you and thank you for the site. though i do not have a child with this syndrome i am still very touched and my heart goes out to you. |
| Name: | Demetria |
| E-mail address: | mommylovesgia@yahoo.com |
| Comments: | I was just in search of information on diseases and I came across your sight. You are absolutely brave and you have a brave heart. You have now made it possible for justin to be apart of someone elses life just by letting us into yours. He is in a wonderful place now. He has peace and for that reason alone, so should you. It is wonderful to see how much love he had surrounding him. Thank you for sharing, God Bless You.......... |
| Name: | Aude |
| E-mail address: | la-vache-milka@voila.fr |
| Comments: | My cusin's son Bradley has this syndrom. Congratulations for your site. |
| Name: | jeffrey |
| E-mail address: | jeffrey30@hetnet.nl |
| Comments: | my daugther as maybe menkes any info are welkom also pesonal expierece too
|
| Name: | Samantha |
| E-mail address: | samantha_beaton@hotmail.com |
| Comments: | I am so very very sorry for your loss. What a beautiful and amazing boy he was. My nephew has been diagnosed with Menkes
and in my search for information I came upon Justin's site and I just wanted to say thank you for creating it. It has been informative and exceptionally moving. God bless you and you family. Sam |
| Name: | Bethany |
| E-mail address: | bethany_adkison@yahoo.com |
| Comments: | Dani, I just wanted to let you know I think about you often. Justin you were an awesome little boy and such a fighter! My nephew James has menkes and says hello! |
| Name: | Bethany |
| E-mail address: | bethany_adkison@yahoo.com |
| Comments: | Dani, I just wanted to let you know I think about you often. Justin you were an awesome little boy and such a fighter! My nephew James has menkes and says hello! |
| Name: | Bethany |
| E-mail address: | bethany_adkison@yahoo.com |
| Comments: | Dani, I just wanted to let you know I think about you often. Justin you were an awesome little boy and such a fighter! My nephew James has menkes and says hello! |
| Name: | tammy fourman |
| E-mail address: | crow72003@yahoo.com |
| Comments: | my son was diagnosed with menkes in march of 2004. i live in indiana and i spoke to dani recently about some things. i really enjoyed seeing those pictures of all the children,i wish that they were all here with their parents where they are needed the most . its made me feel a little better to talk to dani and know that another mom not too far away,has had a boy like mine. im not alone. take care. |
| Name: | Alan Harned |
| E-mail address: | Adog722@aol.com |
| Comments: | Hello, my name is Alan and i am doing a research project about Menkes Syndrom.When i first signed up for the disease i thought it was just a little disease that wouldn't affect me.After looking at your website and seeing Justin and all of the other little children who had the disease, it really opened my eyes.I am truly sorry about your children.I'm sure that they were great kids, and are in a better place.Please know that i will pray for you all and that my life will always be changed.God bless you. |
| Name: | Katy |
| Comments: | I'm not sure if you remember me, but we talked around this time last year about Menkes because I was doing a paper in my genetics class about it. I just wanted to say that I'm sorry for your loss and my thoughts are with you and your family. Be strong, and remember that Justin had a wonderful family that cared a lot about him. |
| Name: | mother of Giacomo |
| E-mail address: | monicapontecosi@virgilio.it |
| Comments: | We are near to all of you an embrace family Bertucci |
| Name: | Jennifer B |
| Homepage URL: | http://www.about.com |
| Comments: | My heart goes out to you and your family. Peace be with you. |
| Name: | lilian Gautier |
| E-mail address: | gautieryolodo@yahoo.fr |
| Comments: | Je t'ai écrit il y a quelques semaines pour te dire que moi aussi j'avais la maladie de menkés et que je venais de l'apprendre à ce jour tu ne m'a pas répondu et je suis très triste.
désolé mais je ne parle pas l'anglais J'espère avoir de tes nouvelles Amitiés lilian |
| Name: | Sis. Emma White |
| E-mail address: | whiteej@msn.com |
| Homepage URL: | http://communities.msn.com/EJWFoundation |
| Comments: | We are in prayer for you and your family. May the Lord peace be upon your contanence as he bring healing in the hearts of all.
Bless you Sis. Emma |
| Name: | KyungJae |
| E-mail address: | kjcisl2hotmail.com |
| Comments: | God bless you Justin
And thank you for your help, it was a GREAT website. |
| Name: | lilian |
| E-mail address: | laurencelionel.gautier@club-internet.fr |
| Comments: | Bonjour,
Je m'appelle Lilian je suis français, j'ai 18 mois et j'ai moi aussi la maladie de Menkés. Je l'ai appris il y a à peine 3 semaines et c'est pour cela que je viens juste de découvrir les sites internet Je voulais rentrer dans votre club mais je ne sais pas parler anglais et je n'y arrive pas aussi je vous fais de gros bisous lilian |
| Name: | lilian |
| E-mail address: | laurencelionel.gautier@club-internet.fr |
| Comments: | Bonjour,
Je m'appelle Lilian je suis français, j'ai 18 mois et j'ai moi aussi la maladie de Menkés. Je l'ai appris il y a à peine 3 semaines et c'est pour cela que je viens juste de découvrir les sites internet Je voulais rentrer dans votre club mais je ne sais pas parler anglais et je n'y arrive pas aussi je vous fais de gros bisous lilian |
| Name: | Auntie (Clarissa) |
| Comments: | Hey Sweetie. Just wanted to say a quick hello!! I haven't wrote in a while, but thought I would tonight. Also wanted to say Congratulations on your new baby brother, he is as sweet and handsome as you are. WE LOVE YOU JUSTIN!!! |
| Name: | whitnee-tiana brown |
| E-mail address: | BABIGYRL0688@YAHOO.COM |
| Comments: | I just wanted 2 send love 2 Justin and his family. I've never heard of Menkes until I had to do a paper on it but this website really touched me. I just wanted 2 give support and let everyone know that I am praying for your family and Don't worry because God will provide all your needs. Much luv
Whitnee-Tiana Brown Columbia, SC |
| Name: | Dolores and Jacob Quast |
| E-mail address: | drjaaaq@hotmail.com |
| Comments: | We are very proud of you for being strong. Keep staying that way. Jacob is doing pretty good himself. We love that song of Mark Schultz. Here is a picture of us and hope you put it in your album. Take care and we will keep praying for all the angles and our friends.
With love and Kisses Dolores and Jacob William Quast P.S. My birthday is on Aug 9,1998 |
| Name: | Grandma Dotti |
| E-mail address: | dotti56@bellsouth.net |
| Homepage URL: | http://www.google.com |
| Comments: | My Darling Little Grandson,
It's been a while since I have sent you a message. Don't always think to do it since I see you in person a lot. But I felt the need tonight. Want to tell you that your school pictures this year are so GREAT. Tell Mommy to take a minute and put it here on your site, so everyone can see what a wonderful little man you are getting to be. We love you dearly and we will always consider you our special one. We don't want to forget that we love sister Dionna and mommy and daddy also. We are going to have to expand our heart space to make room for that new little brother you are getting in Feb. Good night precious and sweet dreams. Will see you for supper tomorrow night so get ready for lots of smooches. Love Always, Grandma and Grandpa |
| Name: | Junea' White |
| E-mail address: | delli_cious@yahoo.com |
| Comments: | Thank You so much for this wonderful website! I will pray you everyday and God Bless You!
Love You Justin P.S. to Justin's mom don't worry everything is going to be fine. Just Stay Strong and Trust in God! |
| Name: | Pam Benjamin |
| E-mail address: | smap42@bellsouth.net |
| Comments: | Hi Justin, I found your web site by looking up the symptoms of menkes syndrome and i am so glad to have found your site. I had a Son, Roger who was born on 6-25-1975, he went to be with the Lord on 3-16-1978. When he was diagnosed with this disease the Dr.'s did not know very much about it, there was only 3 reported case's at the time. I have so much that i could tell you and your Mommy but it would take awhile. I am so glad to see your doing well and i WILL be praying for you and asking God to bless you and your Family. Thank You so much!!!!!!!!! |
| Name: | Pam Benjamin |
| E-mail address: | smap42@bellsouth.net |
| Comments: | Hi Justin, I found your web site by looking up the symptoms of menkes syndrome and i am so glad to have found your site. I had a Son, Roger who was born on 6-25-1975, he went to be with the Lord on 3-16-1978. When he was diagnosed with this disease the Dr.'s did not know very much about it, there was only 3 reported case's at the time. I have so much that i could tell you and your Mommy but it would take awhile. I am so glad to see your doing well and i WILL be praying for you and asking God to bless you and your Family. Thank You so much!!!!!!!!! |
| Name: | Auntie (Clarissa) |
| E-mail address: | scottandclaire@earthlink.net |
| Comments: | Hi Justin...Just wanted to let you know that we were thinking of you (all the time of course), and wanted to say Hello and to tell you WE LOVE YOU VERY MUCH!!! |
| Name: | Tina Zelinski |
| E-mail address: | skiela@optonline.net |
| Homepage URL: | http://www.optonline.net |
| Comments: | My sister Carole Coppola has written in this book. In fact, I just read what she wrote to you a few minutes ago. It was very touching. As she stated, we are the original Menkes Syndrome Family. The name as you know, came from Dr. John Menkes, Columbia Presbyterian Hospital.
Justin is a beautiful little boy. You have a lovely family and there is a lot of love in your home. God Bless you All. I will pray for Justin and your whole family. But, I will make a special prayer for you Dani. You are a beautiful person inside and out. God give you strength, good health and many rewards. Keep your chin up. My son, Edward John died Sept. 3, 1973. I still can't believe it's 30 years. I think of him everyday and will always love and miss him. He was an adorable little boy who unfortunately suffered too much. But, he was loved so much and regardless of what I was told, he knew it. Today, I am a grandmother. My granddaughter's name is Skiela (hence my e-mail address). Skiela is 6 years old now and just started lst grade. She has sure made my husband and I smile a lot. Thank God there is something that can be done for the females in my family and others to come in other families. I adore my daughters (I have 2) Tina Marie just married she's 34 and Carolann, Skiela's Mom she's going to be 28 on the 21st of this month. Well, Dani, again, God Bless you all. Justin is just adorable and your daughter is beautiful. Take care of yourself. Give Justin a kiss for me. Tina |
| Name: | Mayakia |
| E-mail address: | mayakia@starmail.com |
| Comments: | What a touching site. GOD Bless you and keep you all.
|
| Name: | Tricia Luker |
| E-mail address: | TriciaLuker@comcast.net |
| Comments: | What a wonderful website -- and what a wonderful gift Justin is to your family -- and you to him and now you have shared those gifts with all of us. Thank you. |
| Name: | Hanna |
| Comments: | Hi!
Very nice page! I work with a 4-year old boy with Menkes in Sweden and this is a page with alot of facts and helps me understand him better. Love Hanna! |
| Name: | Tiffiany Redtell |
| E-mail address: | wildguy@aol.com |
| Homepage URL: | http://www.score850.com |
| Comments: | Just surfed by and thought I would say Hi from Chesterville. |
| Name: | Piyaporn, MD. |
| Comments: | All of you are the great parents. |
| Name: | Piyaporn, MD. |
| Name: | Raja Abou-Chacra |
| E-mail address: | rajachacra@yahoo.com |
| Comments: | Hi Justin,
We've visited your website many times so thought we'd sign your guestbook. Adam sends you a big hello. Take care. |
| Name: | Allyson |
| Comments: | Justin and family-
I am doing a research assignment on Menkes Syndrome. It must be very difficult to deal with, but keep up hope, because sooner or later there will be a cure! I hope that you can fulfill all of your dreams and live each moment to the fullest. Take time to really talk and spend time with friends and family. There is never enough time. I wish you the best of luck, and hope that everything works out for the best. May God bless you- Allyson |
| Name: | KRISTIN |
| E-mail address: | SUNSHINEANGELK15@AOL.COM |
| Comments: | HI |
| Name: | Tivona |
| E-mail address: | tivona@cuteandsingle.com |
| Homepage URL: | http://cuteandsingle.com |
| Comments: | Enjoyable and attractive site. ~ Nice work! |
| Name: | Bill Hart |
| E-mail address: | bhart70@earthlink.net |
| Comments: | Sorry about the multiple posts, I don't know how I managed that!
-Bill |
| Name: | Bill Hart |
| E-mail address: | bhart70@earthlink.net |
| Comments: | Sorry about the multiple posts, I don't know how I managed that!
-Bill |
| Name: | Bill Hart |
| E-mail address: | bhart70@earthlink.net |
| Comments: | Our thoughts and prayers are with you, Justin, and your family. You are truly an inspiration.
My youngest son has Down's Syndrome, so while he doesn't quite have the same obstacles to overcome, I can at least begin to understand the pride, strength, and joy you bring to your parents. Stay strong, little guy, there are a lot of people out here pulling for you! Best regards, Bill Hart & family bhart70 |
| Name: | Bill Hart |
| E-mail address: | bhart70@earthlink.net |
| Comments: | Our thoughts and prayers are with you, Justin, and your family. You are truly an inspiration.
My youngest son has Down's Syndrome, so while he doesn't quite have the same obstacles to overcome, I can at least begin to understand the pride, strength, and joy you bring to your parents. Stay strong, little guy, there are a lot of people out here pulling for you! Best regards, Bill Hart & family bhart70 |
| Name: | Bill Hart |
| E-mail address: | bhart70@earthlink.net |
| Comments: | Our thoughts and prayers are with you, Justin, and your family. You are truly an inspiration.
My youngest son has Down's Syndrome, so while he doesn't quite have the same obstacles to overcome, I can at least begin to understand the pride, strength, and joy you bring to your parents. Stay strong, little guy, there are a lot of people out here pulling for you! Best regards, Bill Hart & family bhart70 |
| Name: | Bill Hart |
| E-mail address: | bhart70@earthlink.net |
| Comments: | Our thoughts and prayers are with you, Justin, and your family. You are truly an inspiration.
My youngest son has Down's Syndrome, so while he doesn't quite have the same obstacles to overcome, I can at least begin to understand the pride, strength, and joy you bring to your parents. Stay strong, little guy, there are a lot of people out here pulling for you! Best regards, Bill Hart & family bhart70 |
| Name: | connie davidson |
| Homepage URL: | http://www.4guests.com |
| Comments: | God bless.. |
| Name: | nicole |
| E-mail address: | nmmoore@uncg.edu |
| Comments: | I hope that you continue to have a happy and healthy life. Thank you for sharing your experience with me for a project for class. |
| Name: | nicole Geyer |
| E-mail address: | nickymate@yahoo.com.au |
| Comments: | Dear Justin and Dani, I like visiting your website at least once a week. I am so glad that you are doing so well and still such a happy little boy. It has almost been a year since Jackson went to heaven and not a day goes by that his daddy and I don't think about him. He continues to bless us everyday, he sends us messages and the frames full of photos remind us of how lucky we were to have him, if only for a short time. I would like to add his photo to your website if you don't mind but am not too sure of how to go about it. If you could help me that would be great. Thinking of you all, Nicole and Kevin Geyer xxx |
| Name: | lesley |
| E-mail address: | lesley_biggs2001@yahoo.co.uk |
| Comments: | hi i was just looking to see what info i could get on the disease that my two sons asa who would've been 6 in january and kai who is now 4 months ad the symptoms are just starting, god bless you all, all our love, kai headley and mummy(lesley biggs) |
| Name: | kim |
| E-mail address: | skwonky@hotmail.com |
| Comments: | hi,justin.
nice to see that you are doing well,i have written to you on this page before,but have since changed my email address.as my son Ethan,was born on 1st march 1995,and was diagnosed with menkes at three months old,he passed away peacefully at home on 5th April 1997,As with all Menkes children you look very much alike,seeing your little face made me smile,remembering the little time we had with our little angel, my thoughts are with you always,kim cooper.xxxxxxx |
| Name: | Carole |
| E-mail address: | CCoppola50@optonline.net |
| Comments: | Dear Justin,
I am a lady who's family was the first to be diagnosed with this disease and for whom the disease was named for in 1954. My family has been through what you and your family are going through many times. We are all hoping that a cure and an end to this disease is in the near future. May God Bless you and your family and give you all the strenght to continue this difficult journey. You and other children like you will always be in our prayers. |
| Name: | Greg, Becky and Jake |
| E-mail address: | rfischer1@wi.rr.com |
| Comments: | Just wanted to say how much I enjoyed the site. My little Jake wants to wish Justin a fine how-do-you-do. God bless all of you.
Greg |
| Name: | Julie Fischer |
| E-mail address: | ed_fischer@charter.net |
| Comments: | My first grandson, Jake, has just been diagnosed with Menkes and in searching for information I found your site. I will tell my son and daughter-in-law about it. The music and pictures made me cry, but there is wonderful information I know they will be very interested in. Bless you for sharing. It helps to know you are not all alone.
Julie |
| Name: | Diana Whitlock |
| E-mail address: | makeuup@hotmail.com |
| Comments: | I'm 1-yr away from a special ed. degree and in doing research, ran across your website. Please know you have enlightened me in many ways. Also know you have a friend in WV who has prayed for all of these precious faces on your site and their families, too. Thank you for such a truly wonderful website that is both informational and inspiring. I'm sure you have touched so many parents and helped them tremendously. Your reward in Heaven will be worth waiting for! May God bless you all. |
| Name: | Amanda Brown |
| E-mail address: | Browneyez77@webtv.net |
| Comments: | Hi Justin it's Amanda your new Nurse. I'm glad I found your web site. I have learned alot about you that I did not know. It's been a pleasure working with you I hope we can become good friends. you get to feeling better so you can get back to school.
Your Pal Amanda |
| Name: | TERRI Nichols |
| E-mail address: | momstaxi_ca95901@yahoo.com |
| Comments: | HI this is something new to me.I'm a special Ed Teacher for 12 years and i am interested in finding more information on this. God Bless you All |
| Name: | alyssa cox |
| Comments: | hi iam in 8th grade i have lost a few people to menkes syndrome. i will pray for you and your famliy |
| Name: | Mark Andre Neubergerfirm |
| E-mail address: | Mark.aNeuberger1312@aol.de |
| Homepage URL: | http://www.private-krankenversicherung-no1.de |
| Comments: | beautiful site...gonna look around some more. Good to see you! private Krankenversicherung Mark Andre Neubergerfirm |
| Name: | Anna Marie Grodewig Schlefig |
| E-mail address: | Anna.Marie.Grodewigsch@aol.com |
| Homepage URL: | http://www.versicherungsvergleich-1.de |
| Comments: | Awesome work you've done on the site! The wait for an update was definitely worth it ... Versicherungsvergleich bu .... cu Anna |
| Name: | Gunter Walter van Neidfred |
| E-mail address: | gunter.neidfred2@gmx.de |
| Homepage URL: | http://www.rentenversicherungen-vorsorge.de |
| Comments: | Eye-catching and well done site. Good work! |
| Name: | PeterTheo Bogenpfeiler |
| E-mail address: | Peter.Theo.Bogenpfeiler65@gmx.de |
| Homepage URL: | http://www.versicherungsspartipp.de |
| Comments: | This is really a fun website |
| Name: | Henry Thomas Grindrail |
| E-mail address: | henry.Grindrail@none.com |
| Homepage URL: | http://www.sex-erotik-linkliste.de |
| Comments: | Fabulous site. Thanks |
| Name: | Mia Kiotacrook |
| E-mail address: | mia.kio778@aol.com |
| Homepage URL: | http://www.amateurzentrale.com |
| Comments: | Nice site. Easy to navigate ! |
| Name: | Birgit Maike Biedermann |
| E-mail address: | info@none.com |
| Homepage URL: | http://www.nackt-cams.de |
| Comments: | Just wanted to say Hi and I hope things are well with |
| Name: | Denise Querrebeck |
| E-mail address: | denise.quer@2for14free.com |
| Homepage URL: | http://www.dateclub24.de |
| Comments: | very very nice |
| Name: | Nadine |
| E-mail address: | nadine@none.com |
| Homepage URL: | http://www.supersexynet.de |
| Comments: | beautiful pages,the adoption ones are wonderful |
| Name: | yasmin |
| E-mail address: | yasmin@none.com |
| Homepage URL: | http://www.erotiwebs.de |
| Comments: | cool site, great design. Excellent content!! Keep it up |
| Name: | franzi |
| E-mail address: | franzi.t@web.com |
| Homepage URL: | http://www.hardcorenostop.de |
| Comments: | beautiful site...gonna look around some more. Good to see you~! |
| Name: | Sandra |
| E-mail address: | sandra.s@gmx2.com |
| Homepage URL: | http://www.camfunlive.de |
| Comments: | Thank you for developing this good site! |
| Name: | Marion |
| E-mail address: | marion.ibiza@webde.com |
| Homepage URL: | http://www.ibiza-funchat.de |
| Comments: | Good guestbook and good site ! |
| Name: | Silke |
| E-mail address: | silke@aol3.de |
| Homepage URL: | http://www.99-livecams.de |
| Comments: | Klasse Seite! Macht weiter so! Grüsse aus Düsseldorf Germany |
| Name: | Sandy |
| E-mail address: | info@chat4343.ch |
| Homepage URL: | http://www.livecamchats.de |
| Comments: | Hallo! Interessante Seite die Ihr hier habt... Gruss aus Berlin |
| Name: | Thomas |
| E-mail address: | t.mumst@gmx42.de |
| Homepage URL: | http://www.livecam-zentrale.de |
| Comments: | Hallo, eine schöne Seite.... da muss ich mich gleich mal im Gästebuch verewigen |
| Name: | Timo |
| E-mail address: | timo.gross@aol23.com |
| Homepage URL: | http://www.girlshauscams.de |
| Comments: | Hallo zusammen... wollte mich hier auch mal verewigen... Gruss Timo |
| Name: | Bernd |
| E-mail address: | mail@web21.de |
| Homepage URL: | http://www.livecamzentrale.de |
| Comments: | Klasse Seite! Grüsse aus Bayern.... Kommt doch vorbei und macht hier Urlaub ;-) |
| Name: | Franz |
| E-mail address: | franzspatz@webq33.de |
| Homepage URL: | http://www.porta-erotica.de
http://www.porta-erotica.de |
| Comments: | Grüsse aus Österreich.... Wir haben zur Zeit bestes Wetter zum Ski fahren! |
| Name: | Biene |
| E-mail address: | biene@gmx22.de |
| Homepage URL: | http://www.porno-erotic-portal.de |
| Comments: | Tolle Seite! Sehr informativ und übersichtlich... einfach Top! Gruss aus Berlin |
| Name: | Tina |
| E-mail address: | TinaGirly@gmsx.de |
| Homepage URL: | http://www.kissmelive.de |
| Comments: | Guten Tag, Glückwunsch zu der gelungenen Homepage! Gruss TINA |
| Name: | Valerie Scott |
| E-mail address: | svalerie709@aol.ca |
| Comments: | Hi Justin; I just want to say you are truly an angel. Any child who can live with the syndrome is a very special boy indeed. I had a son with the variation of the syndrome. He was born August 25 1993 and went to heaven on February 19 1999. i miss him on a daily basis and so does his sister.Hang in there and I will be thinking of you. |
| Name: | Holly Renegar |
| E-mail address: | Renegar@comcast.net |
| Comments: | Hi Hustin!
I am a school nurse; I also used to teach pediatric nursing and I taught about Menke's Syndrome. One of the 5th grade students here did a project about the importance of copper and its role in our body. I came to your web site to get some information to share with her about Menkes. I really enjoyed your web site and feel like I know you. I wish you all the best. I will come to visit you again! Nurse Holly |
| Name: | Mike |
| E-mail address: | mrmarxism215@hotmail.com |
| Homepage URL: | http://none |
| Comments: | Hello, my name is Mike and i am a sophmore in high school in Philadelphia PA. I was doing a reasearch report for my Genetics class on Menkes Syndrome and visiting your website really helped me understand what Menkes Syndrome is in much better detail than other sourses. Especialy reading the "How Am I" section shows Menkes Syndrome in greater appelation. |
| Name: | David Gavel |
| E-mail address: | theduke@klis.com |
| Comments: | Hi Justin. I play cards on playsite with your Mom. I realize your not big enough to read this but your Mom might tell you for me. I just wanted to let you know that your story has touched a spot deep within my heart. Your mother tells me great things about you and she is obviously very lucky to have you. I hope things go as well for you as possible and I send my love and thoughts to you.
Dave |
| Name: | Haydee Nunez |
| E-mail address: | han@andrew.cmu.edu |
| Homepage URL: | http://www.cmu.edu |
| Comments: | Much love to everyone. I just wanted to send out a hug and a kiss to Justin and all of those people who care about him. I never knew what Menkes Syndrome was until I was assigned to do a paper on it. It is very sad what that genetic disorder can do, but with faith in God we can overcome the sadness and fill our lives with joy. Justin looks so happy in his pictures. May God bless him and keep him happy.
~Haydee |
| Name: | Auntie (Clarissa) |
| E-mail address: | clari737@bellsouth.net |
| Comments: | Hi Justin!!! Auntie was thinking about you tonight and decided that she would get on here and sign your dreambook again. I wanted to tell you how much I LOVE YOU!!!! You are in my prayers.
Love Always, Auntie, Cody, Scott, Kayla, and Taylor |
| Name: | JIMMIE BOWDEN |
| E-mail address: | JIMMIEBOWDE@HOTMAIL.COM |
| Comments: | MY WIFE, ANNA AND I HAVE BEEN THERE. WE LOST TWO SONS, JON TYLER AND JUSTIN LEE, BOTH TO THIS DISEASE. WE HAVE JUSTIN'S TWIN SISTER, JESSICA AND I WORRY THAT SHE MAY HAVE TO ENDURE THE LOSSES WE HAVE HAD TO ENDURE. I WOULD NOT WISH THIS ON ANY ONE, BUT WOULD NOT TAKE ANY THING FOR THE TIME I HAD WITH MY TWO BABIES. |
| Name: | Nicole Geyer |
| E-mail address: | nickymate@yahoo.com |
| Comments: | Hi there, I hope all is well for Justin and your family. I have visited your site plenty of times and many of my family and friends have visited too. You may not remember me from previous e mails but Kevin and I were blessed with a little boy Jackson who was diagnosed with menkes in Feb, 2001 at 10 months old. We have had a wonderful time with Jack, and he had his own little book of adventures. Jackson became an angel on June 22nd 2002 very peacefully at home. We miss him terribly but feel very grateful that we had him in our lives. We will think of you all and your incredible strength regularly. Please feel free to e mail me or have other parents who need some questions answered - I will try to help. All the best. Nicole |
| Name: | KIMBERLY |
| E-mail address: | KRWILHITE@ADAMSWELLS.COM |
| Comments: | THANK YOU FOR SUCH A WONDERFUL AND INFORMATIVE SIGHT. PRIOR TO YOUR SIGHT I WAS COMING ACROSS A LOT OF MEDICAL TERMS THAT EVEN THOUGH I WORK IN THE MEDICAL FIELD LOOKED LIKE A FOREIGN LANGUAGE. I AM LOOKING FOR INFORMATION ON THIS SYNDROME FOR A VERY CLOSE FRIEND WHOSE GRANDSON WAS JUST RECENTLY DIAGNOSED. IT IS A VERY SCAREY THING IN OUR NECK OF THE WOODS BECAUSE IT IS VERY UNCOMMON (OR AT LEAST UNHEARD OF). YOU HAVE A WONDERFUL FAMILY AND I WILL KEEP YOU IN MY PRAYERS AS YOU GET THROUGH EACH AND EVERY DAY AND EACH NEW JOURNEY. GOD BLESS. |
| Name: | Karen |
| E-mail address: | ladybean45@hotmail.com |
| Comments: | Hi Dani and Justin,
I'm so glad I took the time to visit your website. You both are truely an inspiration to parents and children everywhere. I've added you both to my prayers and look forward to stopping in from time to time to see how things are going. Take care you two...be safe and God Bless |
| Name: | Sis. Emma |
| E-mail address: | whiteej@msn.com |
| Homepage URL: | http://communities.msn.com/EJWFoundation |
| Comments: | I was moved my the email I recieved from Dani about our organization donating a computer for a family with Menkes Syndrome. I sent out emails and called donors and I will be contacted monday about a cpu donation. After taking more time to view the site, I was even more moved and sent out emails to others to view the site and to help out were needed. Thank you for requesting our help and we will be there for you. Be blessed
Sis. Emma EJ&W Foundation, Inc. |
| Name: | Lura Allen |
| E-mail address: | luraallen@hotmail.com |
| Homepage URL: | http://luraallen.topcities.com/ |
| Comments: | Dear Dani,
I have visited your home site before but never had the time to read all your pages and see all of Justin's pictures. Now that I have, I must tell you that I enjoyed every moment spent here and I think you have a beautiful family. Justin is an adorable little boy, he's so very special and is so lucky to have such great love in his little life. I pray that there will soon be an easier cure for Menkes disease. You, Justin and your family will be in my prayers always. May God bless each of you with happiness and good health. Dani, dear, you are, indeed, an inspiration to all of us. Love and best wishes to you always, Lura |
| Name: | Nana & Papa |
| E-mail address: | audrey54@bellsouth.net |
| Comments: | Such a big boy, Now 3 years old!!! We love all of you so very much, Dionna, Justin, Dani and Keith.
Nana & Papa |
| Name: | kevin hasprey |
| E-mail address: | haspcotkev@yarhoo.co.uk |
| Comments: | hello just a line to say we know what you are going through my son thomas is forteen .he has menkes and it has been a long hard battle. but every cload has a silver lineing take it one day at a time sorry about the bad spelling just learning how to use a pc please feal free to contact us we have never spoken to anouther pareant of someone who has menkes lots of love kevin debra and my little angle thomas.... |
| Name: | Auntie (Clarissa) |
| E-mail address: | clari737@bellsouth.net |
| Comments: | Hi Justin,
Your mommy sent me the new link to the website, so I just wanted to say I love you very much. I also wanted to let everyone know what a wonderful person my sister is, she is one special person. I love you Justin, Auntie |
| Name: | Tom Janne & Rasmus |
| E-mail address: | jato@it.dk |
| Comments: | Hi Justin and family
We are from Denmark also and are surprised to find you and your family. We are also very exited to find the Menkes-group on Yahoo. Our son, Rasmus is fourteen years old, he is disabled but he is an always smiling and happy boy. We are very interested in the Menkes conference in a few days. Pleace keep us posted about it. We look forward to hear much more about you and your family in the future... Best wishes Tom Janne & Rasmus |
| Name: | sprite ( Pilar) |
| E-mail address: | sprite@fairiemail.zzn.com |
| Homepage URL: | http://www.gizba.com/user/spritefaerie |
| Comments: | Hi, what can I say. My 17 year old son has severe seizure disorders, is severely mentally challenged and has no verbal skills, he doesn't have menkes but regardless of that, from one mother to another with a child with disabilities, my heart goes out to you and your Justin. God Bless you and keep giving you the strength. |
| Name: | l.r. |
| Comments: | im in the 8th grade and have 2 do a science project. i am sry to hear about your son, i hope they find a cure soon. |
| Name: | kim cooper |
| E-mail address: | kimcooper198@yahoo.com |
| Comments: | hi,i am writing in your guest book as my son Ethan Kurt Travis,was born 1st march 1995,and was also diagnosed with menkes on october 1995,he has now left us and became an angel,he died peacefully at home on the 5th april 1997.
i have only just started looking up on menkes,and who i can contact,it was so lovely looking at your photos,and how you are progressong,you reminded me very much of my son. love from kim xxxxxxx |
| Name: | Jeppe M. Fogh |
| E-mail address: | hudevad@yahoo.dk |
| Comments: | My son was diagnosed with Menkes Syndrome for two days ago, and I am of course devastated. He is eight months old.
Appearantly nothing can help my little son, and the only thing we can do is to make his short life as good as possible. We live in Denmark, and since Denmark only has a population of 5.5. mio. there are no other Menkes children at the moment. Therefore I find some comfort in your website, since we can not turn to other families here in Denmark, and this web site shows us that we are not alone. /Jeppe |
| Name: | Delila |
| E-mail address: | advisor@alaskan-husky-dogs.com |
| Homepage URL: | http://www.alaskan-husky-dogs.com |
| Comments: | Very cool web site indeed. |
| Name: | kristen fraser |
| E-mail address: | jematt@attbi.com |
| Comments: | I came to this site after seeing it in the parenting special needs chatroom posting. My son has seizures and autism, and although he does not have Menkes, I feel that we all connect on some level. All of your children are beautiful, and thank you so much for the beautiful songs on the site. My thoughts are with you all, and I am wishing you strength for you and your children!!
With Love, Kristen |
| Name: | Eric Mahy |
| E-mail address: | eric.mahy@talk21.com |
| Comments: | Hello Everybody
I am looking, on behalf of my daughter (Victoria), for parents of children with Menkes disease. She is feeling that she is all out in front of the medics, as she has more experience that any of them with Menkies. Jack was born on May 21st last year (2001), and seems to have the disease very badly. I would welcome contact with parents, or anybody who has experience of children with Menkes. I will put them in touch with Victoria. I would especially welcome contact from anyone in UK who we could, perhaps visit. Please help |