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| Name: | Tamara |
| E-mail address: | tammyhappy@att.net |
| Comments: | A friend of mine has a sister with Rett syndrome and I will be caring for her while the family works. I'm looking for resources and understanding of this terrible syndrome, hoping to make sure I really SEE Isabella when I start caring for her.
Thank you for the info. |
| Name: | Olive |
| E-mail address: | Craftyladybug63@yahoo.com |
| Comments: | I have a beautiful redhead granddaughter. She is 6yrs. old. She has Rett Syndrome. She is so sweet. She likes to come to my house (Nana) She likes to go to school. She also lets us know what she wants. She is a very loving child. I keep praying for a cure. Even with the Retts she has brought a lot of joy to our lives. |
| Name: | gill |
| E-mail address: | speedygilly@yahoo.com |
| Comments: | Very moving. |
| Name: | spyware-removal.onlinewebshop.net |
| E-mail address: | pete_pavlov@gawab.com |
| Homepage URL: | http://spyware-removal.onlinewebshop.net |
| Comments: | http://spyware-removal.onlinewebshop.net |
| Name: | Mary Lewis |
| E-mail address: | mklewis7@aol.com |
| Comments: | I just want to thank you and all of the Retts Parents that have shared their stories with us. We are new to the Rett world and know we are not alone. It is people like yourself, Kathy Hunter and others who have had to start your journey before there was an internet and other resources to connect these families and children that have made our understanding and transition easier. God Bless You and Danni. I see your posts and always look forward to the pioneers in Rett to reply and give advice....Hugs to you and your Angel. |
| Name: | Stephanie Faherty |
| E-mail address: | thomasfaherty@hotmail.com |
| Comments: | I just wanted to let you know I am the mother of a beautiful boy - yes, boy - who was diagnosed with a-typical Rett Syndrome through chromosome testing. It is referred to as a-typical because he has very few of the typical Rett Syndrome characteristics. If our neurologist had not sent us to a geneticist specializing in children's disorders at Children's Hospital Boston, we probably never would have known because our neurologist never thought to test him for what is mostly known as a female specific disorder. We too have found very little information regarding males with the disorder and find it very frustrating. He is the light of my life and he has opened doors for me and my family that we never would have found ourselves. We are eager to hear from anyone else who has a boy diagnosed with Rett Syndrome. Keep up the great work everyone!! God is paying attention and in heaven we will see our children as God sees them! |
| Name: | pedro reyna |
| E-mail address: | famreynamiss@live.com.mx |
| Name: | Tarah |
| E-mail address: | dtz411@verizon.net |
| Comments: | I just found out that my daughter had retts about 3 months ago. It is great to know that there are so many other people out there that understand. My daughters name is Julia, god she is the best, we love her so much. Julia will be 2 on valintines day[she has always had my heart]. Im new to this so I just keep looking for people and places to reach out to, thank you for being one of them. |
| Name: | Tarah |
| E-mail address: | dtz411@verizon.net |
| Comments: | thank you for your insight |
| Name: | Olive |
| E-mail address: | craftyladybug63@yahoo.com |
| Comments: | Hi I am Nana to a 4yr.old angel. She is a beautiful girl and the light of my life. I just found this site.
Olive |
| Name: | rosemarie marin |
| E-mail address: | rpmarin@yahoo.com |
| Comments: | i have a niece seemingly diagnosed to have retts. her mother, my sis can't have the strength anymore to read everything or anything about it... i as her sister would want to help my niece.. i can see her still walking... although i always find her to wring her hands... but how she hugs me.. and i can still see the smile on her face whenever she sees us... she kisses me oftentimes.. but how i pity her cause i know she can no longer use her hands as i what i do right now... who's gonnatake care of her till she grows up...one day, i believe i will have the pwer and magic to let her say a word...and let her hold anything she likes...i believe they are angels that constantly remind us that we have to help and let us see their world |
| Name: | Amanda |
| E-mail address: | amanda_jordan4262@yahoo.com |
| Comments: | My daughter Kloey was diagnosed with RTT Jan 2004, I was absolutely devestated and there were days that I just didnt know how I was going to make it. It took almost a year before I would even look up any information about this terrible disease. I can honestly say that on those days that I just wanted to run and hide the only thing that kept me hanging in there was this amazing smile that just seemed to say "everything is going to be o.k." from this beautiful little girl. Eventually I realized that I have to accept this and be there for her, because this is the same child that I had so many hopes and dreams for and I love just as much today than I did the day she was born and nothing will ever change that. So now when someone says to me, I dont know how you do it, or Im not that strong, all I say is "I just love her, she is my child" and that will never change, So until there is a cure for Retts I will be right by her side telling her what a big girl she is and how much mommy loves her. And even after that I'm not going anywhere because one of my dreams now is to hear she loves me too. |
| Name: | Tricia Balderree |
| E-mail address: | pouty.face@yahoo.com |
| Comments: | Wishing you only the best! |
| Name: | Ann Price |
| E-mail address: | anniereturns@aol.com |
| Comments: | My grandaughter is 3 sept 4th, she was diagnosed last yr with Retts, i try so hard to stay strong for my daughter, but find myself crying myself to sleep at nights, once we were told what was wrong, we seemed to be left to fight for where to go and what to do next, it should not have to be like this, my angel has such big brown eyes that melt me each time i hold her, she can't walk or talk, i'm praying all that will come, it is hard to keep her from loosing weight so easy, so many questions i have, it's hard, thanks for letting me sign your guestbook xxx |
| Name: | tony |
| Comments: | lovely to see another rett angel enjoying life |
| Name: | Penny Damesworth |
| E-mail address: | pdamesworth@dyersburgtn.gov |
| Comments: | I just found out my cousin's daughter was killed in an automobile accident about 1 1/2 weeks ago. She had Rett Syndrome. I never met her as I have not seen my cousin in 30 years or more. I am sad none the less. Lizzie was my cousin Brenda's baby girl. I new she was disabled but thought she had down syndrome. Brenda told me it was Rett Syndrome. I had never heard of it and that is why I have visited your site. Please say a prayer for Brenda. Lizzie was 23. Penny Damesworth |
| Name: | Oliove Omslaer |
| E-mail address: | craftyladybug63@yahoo.com |
| Comments: | I have a beautiful 3 year old granddaughter that has Rett Syndrome. We have known for a year now. There are so many questions and it seems there are not many answers. She is such a loving happy child. She has her way of letting you know what she wants. She is such a joy. Along with the joy there is concerns when she gets sick she is really sick. It is hard to keep her weight on an even keel. |
| Name: | Sigurlaug Vordís |
| E-mail address: | sillaey@hotmail.com |
| Comments: | Hi hi I just wanted to tell you how greate homepage you have created and how wonderful and beutiful thinking you have dedicated youre self. I think its admirable how you see things and probably helped many parents with youre positive and bracing homepage. I dont have children with Rett syndrome but I was reading a book that one father here in Iceland wrote aboute his doughter and his conection with her, then I wanted to know more aboute the syndrome to try to understand how parents must feel like and have to go through when their children have long-term sicness. I am sure that your homepage has inspierd many parents to enjoy their daughters inspite their illness and as you say stop blaming them selfs. I just wanted to tell you and thank you for being positive and making something good oute of hard sytioation. Just keep up youre spirit because you have most likely waken many peoples spirits and maked them not loose hope and positivety for life.
Sincere Silla |
| Name: | Bopie & Nadine Booth |
| E-mail address: | bknbooth@yahoo.com |
| Comments: | Thanks so much for taking the time to do this
it helps a lot us. We all have a difficult journey with our angels, but also much joy. |
| Name: | Vickie Einspahr |
| E-mail address: | Vickielynne47@comcast.net |
| Comments: | I have a beautiful 5 year old little girl diagnosed right after Christmas with Rett Sydrome. I am not over the shock disbelief heartache. its has taken over all my thoughts dreams hopes for the future. I am blessed that she can walk use a spoon to eat and laughs 90% of the time this is my late in life baby and she will always be the love of my life . thanks for letting me share my babys name is Victoria Rose or to those who know her we call her Chick she sounds like a little bird.... |
| Name: | Christy Kojak |
| E-mail address: | rastis43@aol.com |
| Comments: | HI I ALSO HAVE A DAUGHTER WHO HAS RETTS SYNDROME,SHE IS 9,SHE HAS 3 BROTHERS AND A SISTER.SHE CAN NOT TALK ARE WALK AND STILL IN DIAPER,BUT SHE CAN TELL A STORY WITH HER EYES.IT GETS HARD AT TIMES BUT WHEN SHE LOOKS ME IT MAKES IT ALL WORTH IT.SHE IS A TRUE ANGEL SENT DOWN FROM HEAVEN.THANK FOR ALLOWING ME TO SIGN..CHRISTY AND CHY-ANNE |
| Name: | Manuel Velazquez |
| E-mail address: | carmensainz5@telefonica.es |
| Comments: | Vivo , por decir desde el 2002 con mi angel CARLOS QUISIERAMOS PONERNOS EN CONTACTO CON MAS CASOS EN NIÑOS,esta diagnosticado con plena seguridad. |
| Name: | janneise walker |
| E-mail address: | babysitterbrit@bellsouth.net |
| Comments: | I am a student at the University of Alabama at Birmingham. I am in the Social Work program. I choose Rett's Disorder for my presentation. I picked the topic because I knew little on the subject.
My hat's off to the parents who have dedicated their lives in promoting the awareness of Rett's. My everyone keep up the good work. I hope to be a mouth piece now, since I do know a little on this disorder. I will be sure to represent properly. |
| Name: | TAMMY |
| E-mail address: | TAMMYWISE@NEXTEL.BLACKBERRY.NET |
| Homepage URL: | http://WWW.WISE1296@YAHOO.COM |
| Comments: | MY NAME IS TAMMY AND I HAVE A 12 YEAR OLD DAUGHTER WITH RETT SYNDROME.I AM A YOUNG MOTHER DEALING WITH MY DAUGHTER(CANDRANEE).HER FATHER IS NOT IN HER LIFE BECAUSE HE CAN'T ACCECPT THE FACT THAT SHE'S HAS RETT.TO THE PARENTS WITH A CHILD WITH RETT SYNDROME,REMEMBER GOD DON'T PUT NOTHING ON YOU THAT YOU CAN'T BARE.MY DAUGHTER DON'T WALK,TALK AND STILL IN DIAPERS.THANKS FOR LETTING ME SIGN YOUR DREAM BOOK. PARENTS KEEP YOUR HEADS AND STOP THAT CRYING,AND BE STRONG FOR YOUR CHILD. |
| Name: | TAMMY |
| E-mail address: | TAMMYWISE@NEXTEL.BLACKBERRY.NET |
| Homepage URL: | http://WWW.WISE1296@YAHOO.COM |
| Comments: | MY NAME IS TAMMY AND I HAVE A 12 YEAR OLD DAUGHTER WITH RETT SYNDROME.I AM A YOUNG MOTHER DEALING WITH MY DAUGHTER(CANDRANEE).HER FATHER IS NOT IN HER LIFE BECAUSE HE CAN'T ACCECPT THE FACT THAT SHE'S HAS RETT.TO THE PARENTS WITH A CHILD WITH RETT SYNDROME,REMEMBER GOD DON'T PUT NOTHING ON YOU THAT YOU CAN'T BARE.MY DAUGHTER DON'T WALK,TALK AND STILL IN DIAPERS.THANKS FOR LETTING ME SIGN YOUR DREAM BOOK. PARENTS KEEP YOUR HEADS AND STOP THAT CRYING,AND BE STRONG FOR YOUR CHILD. |
| Name: | Patrick S. Patterson |
| E-mail address: | tristar@quixnet.net |
| Comments: | I am the father of a child who was just diagnosed with Retts, and i'm just trying to find places where we can go to get information from other people who are dealing with this as well. So I appreciate this site you have put together. |
| Name: | Debbie DiSaverio |
| E-mail address: | JDS2002@Comcast.net |
| Comments: | Hello - My daughter has Rett Syndrome! She turned 3 on August 8th. I cry every day and try to get past the death of the daughter I thought I was going to have. All the dreams have disappeared!!!! I look into her eyes and know something is there and that she needs me! I'm sorry but I can't go on............... |
| Name: | sue bleichner |
| E-mail address: | watrrlily@yahoo.com |
| Name: | delphine |
| E-mail address: | delphineleclercq@skynet.be |
| Comments: | my little Perrine is 4 and was diagnosed with rett at 2 1/2 my husdand direcly leave us alone
we are living in belgium and really alone with rett's syndrom Perrine is a beautifull girl and I love her so much but life is relly hard ... kisses and love from belgium delphine |
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| Name: | Heather Long |
| E-mail address: | mkeklng@yahoo.com |
| Comments: | Thankyou for sharing this website. My 3 year old daughter is also an angle. She is the most beauitfull little girl. She can light up a room with one little smile. Good luck with your daughter.
|
| Name: | Linda |
| E-mail address: | nonnaluvstyler@hotmail.com |
| Comments: | I just meet the sweetest little angel with Rett's. I have never heard of it so I was surfing for info. Your site is very informative and has touched my heart.
Thank you, Linda |
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