Randy and Epidermolysis Bullosa
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Name: leisa packer
E-mail address: leisapacker@yahoo,com
Comments:Hello Randy I have A 6 year old niece with RDEB.
Wednesday, August 8th 2007 - 04:39:45 PM
Name: leisa packer
E-mail address: leisa packer@yahoo.com
Comments:Hello Randy I have a 6 year old niece with RDEB
Wednesday, August 8th 2007 - 04:38:22 PM
Name: leisa packer
E-mail address: leisapacker@yahoo,com
Wednesday, August 8th 2007 - 04:33:25 PM
Name: Amy Toney
E-mail address: amy.toney@yahoo.com
Comments:I am sorry for all you are going through. Bless you all. I wish there was something I could do for you, but I have nothing to offer. Only my prayers.
Tuesday, March 13th 2007 - 08:18:31 PM
Name: Debbie Gentry-Brown
E-mail address: Kitteninalabama@Msn.com
Comments:Your story is sooo like our own. Our little girl Charlotte was born last year 8-7-05. Reading a page from your life, was like looking back on mine. Charlotte was wisked away and we too spent many hours at the hospital. Thank you for making this site! And your son is so adorable!
Debbie Brown (charlotte' mom)
Saturday, July 1st 2006 - 08:29:22 PM
Name: amber oyemola
E-mail address: aloyemola@yahoo.com
Comments:hello,

i know we have never come face to face before, but i am so proud of your family and the story of triumph. your story reminds me that God has a purpose for everything and who know your story may have been meant just for me to read it. you give lil randy the biggest and tightest hug he can stand from a complete stranger and let him know i said thank you!!! i am 24, married and have a two year old daughter. as every mom knows being a wife is hard enough not to mention a two year old but randy has just reminded me of what it is all about. thanks again and may God continue to keep you and bless you in His Sons name Jesus Christ! Aman

ps. get ready b/c i feel in my heart God has something in store for this family very special.
Tuesday, April 25th 2006 - 02:52:19 PM
Name: amber oyemola
E-mail address: aloyemola@yahoo.com
Comments:hello,

i know we have never come face to face before, but i am so proud of your family and the story of triumph. your story reminds me that God has a purpose for everything and who know your story may have been meant just for me to read it. you give lil randy the biggest and tightest hug he can stand from a complete stranger and let him know i said thank you!!! i am 24, married and have a two year old daughter. as every mom knows being a wife is hard enough not to mention a two year old but randy has just reminded me of what it is all about. thanks again and may God continue to keep you and bless you in His Sons name Jesus Christ! Aman

ps. get ready b/c i feel in my heart God has something in store for this family very special.
Tuesday, April 25th 2006 - 02:48:47 PM
Name: amber oyemola
E-mail address: aloyemola
Comments:hello,

i know we have never come face to face before, but i am so proud of your family and the story of triumph. your story reminds me that God has a purpose for everything and who know your story may have been meant just for me to read it. you give lil randy the biggest and tightest hug he can stand from a complete stranger and let him know i said thank you!!! i am 24, married and have a two year old daughter. as every mom knows being a wife is hard enough not to mention a two year old but randy has just reminded me of what it is all about. thanks again and may God continue to keep you and bless you in His Sons name Jesus Christ! Aman

ps. get ready b/c i feel in my heart God has something in store for this family very special.
Tuesday, April 25th 2006 - 02:48:02 PM
Name: Tonia
E-mail address: TDrake4475@aol.com
Comments:I tried to email you but was not successful. My husband works for the CPD. I have a question about the fundraiser and I found that we have a lot in common. Please email me when you get a chance. Thank you and God bless, Tonia
Saturday, March 11th 2006 - 01:49:10 PM
Name: Rulez006
E-mail address: xujator@inbox.ru
Homepage URL: http://chocolate.sexclon.com/chip-chocolate-cookie.htm
Comments:I feel like an empty room, but eh. Nothing seems worth doing. I haven't gotten much done today.
Friday, February 17th 2006 - 03:49:07 PM
Name: Andrea
E-mail address: andrea_gutierrez23@hotmail.com
Comments:you dont how you are an inspiration to all of us, you are a real hero to many. you have endured so much in your little life that most probably coundn't in a lifetime. you are one of a kind.
Friday, February 17th 2006 - 03:29:57 PM
Name: therese
Comments:hello my name is therese and my son have EB Dystrofic. we live in sweden, and i know how you feeling! A big hug from us in sweden. you can write to us (klingerud 532 65591 karlstad sweden)
Wednesday, February 15th 2006 - 12:04:07 PM
Name: Murat38112
E-mail address: xujator@inbox.ru
Homepage URL: http://pimple.win-eto.com/breast-pimple.htm
Comments:I just don't have much to say recently. Such is life. I've basically been doing nothing. Basically nothing seems worth bothering with. Oh well.
Sunday, February 12th 2006 - 09:30:55 PM
Name: BJ Maselli
E-mail address: bmas8@yahoo.com
Comments:Hey Randy ,
How are you buddy, I enjoy the time I get to spend with you, you are truly a very special little man. You are stronger than most and stronger than i could ever be. Randy you are someone who i look up to. I look forward to our relationship with you and your wonderful parents. I will do whatever i can for you to make your life easier, because you have taught me so much so quick.
Thanks
BJ Maselli
Wednesday, February 1st 2006 - 04:03:44 PM
Name: Murat68798
E-mail address: master@master.com
Homepage URL: http://pillow.naturalspy.com/index.htm
Comments:I've just been staying at home not getting anything done. I've basically been doing nothing worth mentioning. My life's been pretty unremarkable these days. Eh.
Monday, January 30th 2006 - 01:55:55 PM
Name: christopher jointer
E-mail address: cjj1975@aol.com
Comments:I Just want to say that i am a 30 year old man who has eb. My parents didn't know what it was. But I thank my heavenly father that he allow me to live this long. I will continue to pray for your family. Remeber this " No matter what you go through every day remember that is God is with you, and he want put nothing on you that you can't bear.If you have any concer please feel fre to email anytime time and i will respond. may God bless you and your family.
Tuesday, December 13th 2005 - 11:32:48 AM
Name: DeD47232
E-mail address: master@master.com
Homepage URL: http://cartridge.pornclon.com/cheap-printer-cartridge.htm
Comments:I just don't have anything to say right now. I haven't been up to anything recently, but it's not important. I've just been sitting around waiting for something to happen, but shrug.
Friday, December 9th 2005 - 02:28:52 PM
Name: Katie and Christy
E-mail address: Katie9129@hotmail.com
Comments:We feel so sad for baby Randy and youre family! We hope he lives his life like there is no tomrrow and succeed in life with whatever his desires are.

with all of our love and support,
Christy and Katie (Age 13&14)<3
P.S. please email us back as soon as possible!!!
we would love to hear from you!!
Wednesday, December 7th 2005 - 09:33:32 AM
Name: Nikia Jewett
E-mail address: dannikjewett@yahoo.com
Comments:We have been thinking about your family and hope all is going well. We will continue to keep you in our prayers.
Tuesday, October 25th 2005 - 10:14:29 AM
Name: Tasha
E-mail address: tmorin@remaxnp.com
Comments:Randy is beautiful. He's so blessed to have a mother and family like yours.
Wednesday, October 5th 2005 - 12:29:29 PM
Name: sidm132
E-mail address: sidm132@hotmail.com
Homepage URL: http://ringtones.ri.funpic.org/verizon-ringtones/free-polyphonic-ringtone-from-verizon.html
Comments:Hello
Friday, August 26th 2005 - 12:43:51 AM
Name: vanessa
E-mail address: wintersmp@aol.com
Comments:I'd like you to know my heart goes out to you and your family.I to have eb also I've had 3 children who have it also.The difference between us is we have the mild case which is the simplex.Our family also has suffered loss of children.We have lost our first born at the age of 4.Which we do not really know to this day if eb had anything to do with it.I have also miscarried a set of twins in 2003.I know that dealing with eb can be very hard at times.My best wishes to you in the future and hope one day there will be a cure so our little ones will not have to suffer like they do.Again all the best to your family hugs to you all. the Winters family
Monday, August 15th 2005 - 04:29:20 PM
Name: zoldberg624
E-mail address: zoldberg624@hotmail.com
Homepage URL: http://www.domen1.ru
Comments:Hello
Wednesday, July 13th 2005 - 03:41:17 AM
Name: Larry Cassity
E-mail address: Cassitoo@yahoo.com
Comments:Randy (Sr) - I hope you still remember me. I was stationed at Kadena AB with you in the early 90's. You and I had some great times on the flight line. I'm sure you remember "The Crew Chief Rap". I sent you an email today after trying to locate you for many years. I'm interested in knowing more about you and your family. Your story about your son was very touching. Please get in touch with me soon and we'll catch up on our lives.
Larry Cassity - Seattle Washington
Tuesday, June 28th 2005 - 03:45:09 PM
Name: Dorothea Hessom
E-mail address: dmhessom@copperfrog.net
Comments:My heart goes out to you and your family. Randy is so very lucky to have a mother like you. I have a younger brother who has had two brain surgeries and also battled testicular cancer. I use to wonder how could a parent get through such a devistating sequence of events involving a child. But now I understand alittle better now that I have kids of my own. You just get through it. You have to as those are your babies. Be strong and my prayers will be with you and your family.

Dorothea Hessom
mommy to...
Haley Nicole 01.14.1998
Kyle Christian 10.11.2000
Ashley Renae 01.24.2002
And awesome nursing student! (per Mrs. Mejia)
Monday, June 27th 2005 - 04:21:13 PM
Name: kopernik321
E-mail address: kopernik321@hotmail.com
Homepage URL: http://blacklesbianrose.com/lesbian-photos/amatuer-lesbian-photos.html
Comments:Hello
Sunday, June 26th 2005 - 06:54:32 AM
Name: solyps345
E-mail address: solyps345@hotmail.com
Homepage URL: http://www.domen3.ru
Comments:Hello
Thursday, June 23rd 2005 - 04:11:51 AM
Name: sense322
E-mail address: sense322@hotmail.com
Homepage URL: http://www.domen1.ru
Comments:Hello
Wednesday, June 15th 2005 - 09:11:13 PM
Name: 382382
E-mail address: 382382@hotmail.com
Homepage URL: http://pharm.lowt.info/cat/xanax.html
Comments:Hello, nice to meet you!
Thursday, May 26th 2005 - 03:55:28 AM
Name: repco242
E-mail address: repco@repco.ru
Homepage URL: http://www.repco.ru
Comments:VISIT MY SITE!!!
Thursday, February 24th 2005 - 10:15:18 PM
Name: aquatic-store.com
E-mail address: sales@aquatic-store.com
Homepage URL: http://mature-and-young.com/mature-stockings.html
Comments:Visit my site www.aquatic-store.com !
Monday, January 31st 2005 - 04:15:00 PM
Name: italiancharms943
E-mail address: italiancharms943@hotmail.com
Homepage URL: http://www.italiancharms.cc/where_can_i_find_gold_charms_in_the_shape_of_fish.html
Comments:Hello, you have been making good site :) Respect.
Saturday, November 6th 2004 - 04:41:19 PM
Name: mae lehman
Comments:my son was born in 1978 with eb. the drs had no idea what it was. my son is 26 now and is scarred really bad on his legs, feet, and hands.im just learning about this disease, i hope your son is doing good, your in my prayers. mae
Tuesday, September 21st 2004 - 06:53:03 AM
Name: SONYA KRYKA
E-mail address: aquarian_smiles4226@yahoo.com
Comments:i just want to say what an incredible mother you are and how much compassion I have for you and your husband and all other EB parents out there. I don't know any children with this disease, but I have been researching it all the same. Thease kids are so lucky to have such loving parents. God bless you and your family!!!
Saturday, July 17th 2004 - 12:20:40 PM
Name: frances de la cruz
E-mail address: francesdelacruzstar@yahoo.com
Comments:Hello, well after viewing your story , it was hard for me to even think about the pain you all go threw .My prayers and thoughts are with you , what realy made me research was a show ,I saw in HBO My Flesh and Blood . I don't know anything about you , but hopeing to hear from you as a pen or email pal frances ,,,,,,,,,,,,take care of yourself
Tuesday, June 22nd 2004 - 01:02:50 PM
Name: Dianne
E-mail address: dianne.belcher@nc.usda.gov
Comments:
Such a beautiful little boy.

God bless you and your family.
Wednesday, May 26th 2004 - 05:56:16 AM
Name: Greg Yeargan
E-mail address: greg1669@yahoo.com
Comments: Dear Friends,
I have had eb since birth and my 10 year old son has it. I understand and send love and prayers.



Yours in Christ,
Greg
Friday, April 23rd 2004 - 03:11:22 AM
Name: james fiore
E-mail address: janda2fl
Comments:hello, i was crusing the internet trying to find out some info on a little girl with a skin blisters when i came across your article. thank you for the time to write about your son's situation. it will help me in my job. as a pharmacist i feel it is just as important to know about how illness and injuries affect peoples lives . i learn something new today.. thanks again... he really is a cute boy.
Friday, January 3rd 2003 - 03:46:36 AM
Name: KARA HARRISON
E-mail address: harrisonsouth@yahoo.com
Comments:Our son, Jack died from Trisomy 18 at 21 weeks gestation, in July 2002. I find that reading about other peoples situations sometimes makes mine seem easier. God Bless You and may your children remain healthy all there lives.
Sunday, November 10th 2002 - 04:00:04 PM
Name: KARA HARRISON
E-mail address: harrisonsouth@yahoo.com
Comments:Our son, Jack died from Trisomy 18 at 21 weeks gestation, in July 2002. I find that reading about other peoples situations sometimes makes mine seem easier. God Bless You and may your children remain healthy all there lives.
Sunday, November 10th 2002 - 03:58:20 PM
Name: Elle
E-mail address: elle@great-blue-herons.com
Homepage URL: http://www.great-blue-herons.com
Comments:Congrats on your nice site!
Sunday, August 11th 2002 - 03:04:03 AM
Name: MONICA WINDER
E-mail address: MONICA189142002@YAHOO.COM
Comments:DEAR RANDY,
MY HEART AND THOUGHTS ARE WITH YOU. I HAVE SOME UNDERSTANDING OF WHAT IS GOING ON WITH YOU AND YOUR FAMILY AS IT IS HAPPENING TO MINE. OUR LITTLE HAYLEE IS ALMOST TWO NOW AND SHE IS HANGING IN THERE. WE ALL WISH YOU THE BEST.

MONICA



Wednesday, July 31st 2002 - 01:18:51 PM
Name: MONICA WINDER
E-mail address: MONICA189142002@YAHOO.COM
Comments:



Wednesday, July 31st 2002 - 01:15:44 PM
Name: carrie harper (aunt)
E-mail address: carriedanharper@aol
Comments:lil randy uncle dan and i love you
Tuesday, February 12th 2002 - 09:57:17 AM
Name: Steven
E-mail address: csphdsteve@aol.com
Comments:Sometimes the greatest pain you feel is nothing compared to someone else's. My heart goes out to you more than you could imagine.
Tuesday, January 8th 2002 - 10:32:52 PM
Name: Carla Banks-Williams
E-mail address: carlabw@ctonline.org
Homepage URL: http://www.ctonline.org
Comments:I have been asked to promote a joint fund-raiser that three parishes in our diocese are doing for Randy. I have "borrowed" a picture of Randy from your web site for the newspaper (The Catholic Times) so that people will go to the dance and raise funds for your sweet angel. I talked with Mike Sliemers, who works with Randy's grandma, and he said he would give you all my phone numbers. We go to press Weds morning (Jan. 2) and I just haven't had much time or luck getting any info. We will do a bigger story after the dance. Right now, I just want to get people interested in attending. It's Jan. 11, at St. Mary's in Delaware.
Monday, December 31st 2001 - 02:03:54 PM
Name: ALI
E-mail address: BILLIEALI@AOL.COM
Comments:YOU'RE STORY IS SO SAD, MY PRAYERS ARE WITH YOU SON.
Friday, December 7th 2001 - 12:44:48 PM
Name: Mark Loreti
E-mail address: glycoform@hotmail.com
Comments:Iv been read your story in the news paper and found your
webpage by chance.
I Have a gift for you it may very well be more precious
than you can imagine. It is information. Go to
www.glycoscience.com & www.glycominds.net this is a site
primarly for physicians.

Please call me if you want more information its up to I can
help.I live right here on the westside.
Mark 276-3722
Friday, July 20th 2001 - 07:12:12 PM
Name: Paul Lovato
E-mail address: plovato@gallup.net
Homepage URL: http://www.gallup.net/~plovato
Comments:I also have EB like Randy. I am an 18yr old college
student. I am glad that he is a strong young guy. When I
was young and sometimes now, I can be a little Napoleon.
Email me if you have any, and I mean any, questions.
Friday, April 6th 2001 - 01:05:52 AM
Name: Linnet
E-mail address: jernet98@home.com
Homepage URL: http://www.geocities.com/jernet2000/jernet.html
Comments:Randy is a doll... What a cute kid!
Daphne, I am so glad to know you your a very nice person!
Many hugs,
Linnet
from the EBworld List!
Wednesday, December 27th 2000 - 01:59:05 PM
Name: David A. Younker
E-mail address: Younk2@aol.com
Comments:i cannot even begin to tell you guys on how strong you must
have been and continue to be. having had the pleasure to
have met both of you and little randy, has put a new
meaning to life. all i can do is wish and pray that they
are able to find a cure for this, so that the day will come
for randy to play in his first ball game or what ever he
choses to play or do. please let me know so that i may be
in attendance if you would not mind. if either of you ever
need anything please don't hesitate to ask, your clasmate
and friend Younker 1516.
Friday, October 20th 2000 - 10:17:08 PM
Name: Marisa De La Fuente
E-mail address: ebmarisa@lycos.com
Comments:What a beautiful website!!! Thank you for sharing your EB
story... being another EB mom, I really appreciate it.

God Bless you!
Saturday, October 14th 2000 - 04:18:22 PM
Name: (Great) Aunt Jeanie and Uncle Paul
E-mail address: jmayhew@preferred.com
Comments:Dear Randy, we really appreciate getting the e-mail about
the web page, and looking at your beautiful family
pictures. We prayed for you when you had to be in the
hospital recently. We are looking forward to meeting you
in October, when your family will be coming to our house in
Tennessee. Stay out of trouble now, and take real good
care of your self!

Love, Aunt Jeanie and Uncle Paul
Sunday, September 10th 2000 - 08:12:49 PM
Name: Mimi Mayhew
E-mail address: papamimi13@aol.com
Comments:Dearest Little Randy,

I sure love you bunches! I understand that you have been
having lots of fun with Grumpy these past few weeks. You
have learned to play the harmonica and you get back rubs
from him. I can't wait until we are together in Tennessee
in October, I'm looking forward to reading a book with you
and your brother and sisters. I miss you very much! I hope
that when we get together, you'll be ready for a nice hug!

Love you!!
Mimi Mayhew
Saturday, September 2nd 2000 - 06:19:27 AM
Name: Aunt Annie
E-mail address: Ablair75@aol.com
Comments:My dearest Lil' Randy,

I love you so very much! You are such a blessing in our
family. You are a little ray of sunshine for everyone to
see.

Give your brother and sisters a hug for me and tell them
that I love them bunches.

Love you,
Aunt Annie & Uncle Scott
Kayla, Mikey, Robbie, and new baby
Thursday, August 31st 2000 - 01:59:40 PM
Name: Tammy Bradley
E-mail address: JEB2Boys@aol.com
Comments:Hi Daphne, I think you did a great job on your webpage for
Randy. He looks like a very happy camper! All your little
ones are cuties. Take Care and I'll get those vaseline
tubes to ya asap :O)
Tammy Bradley mom to Jeffrey and Christopher JEB
Sunday, August 27th 2000 - 08:18:56 PM
Name: Pam Bitner
E-mail address: Ludie818@aol.com
Comments:What a beauiful webpage, you did for you son , I enjoy
visiting it, My grand-daughter Brittany also has RDEB and
she is 5 yrs old, and we live in Salem, Oregon, again you
did such a great job!!

GRANDMOTHER PAM OF BRITTANY
Friday, August 25th 2000 - 06:37:48 PM
Name: Jennifer Hardy
E-mail address: Jennij2001@aol.com
Comments:Ann just sent me this page, Randy is so beautiful. I've
only seen pictures of him when he was first born and he
just keeps getting more and more beautiful. I wish nothing
but the best for Randy, I know that with the parents that
he has, he will grow up and truly live life to its fullest!
Tuesday, July 4th 2000 - 07:39:48 PM
Name: Rachelle
E-mail address: c.lively@cableinet.co.uk
Comments:What a lovely little boy you have. I have a niece with
Junctional EB. She is 3 month old and still only weighs 5lb
5oz, but apart from that is doing fine with not many
blisters. I really do believe love and a caring family is
the best medicine of all. Keep up the good work. Rachelle
Thursday, June 15th 2000 - 11:10:09 PM
Name: Steve and Sue Thoennes
E-mail address: sthoennes@mediaone.net
Homepage URL: http://www.pilink.com/mn/jasonthoennes
Comments:Daphne - Great web site, I belive Silvia has her handywork
in here, looks good! It was nice talking to you tonight
for about 5 mins. I handed the phone over to my wife Sue
and am glad you two were able to talk for about an hour. I
listened as Sue talked to little Randy, I wanted to talk to
him too, but I didn't get a chance. Sue and I are both
amazed that you change litle Randy's bandages all by
yourself!!! You're a great person and Sue and I both
continue to pray for little Randy and for your entire
family.
Sunday, June 4th 2000 - 09:18:06 PM
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