Dezra and Dalton Sky
06-13-2001, 01:07 PM
To Whom It May Concern, I know how very busy you must be, but I must try and reach someone. Many times over the last 7 yrs I have made phone calls leaving messages on the subject yet still my voice is not heard. I have sent mail with no answers back from anyone. At times it leaves me with the same feeling, that we are out here all alone. I would hope if you could possibly find a moment in your very busy day to meet my son Dalton Sky. He was born with a rare and sometimes fatal skin diease known as Epidermolysis Bullosa or EB. I am not asking for much, just for someone to maybe notice these very special children and perhaps make other more aware that we as Mothers are not so alone. There are others of us out here just waiting, searching and hoping for even a light of hope. Dalton and I wish only to reach out to Mom's already here, as well as those I know shall come after us and perhaps even if its just to let them know that there is someone who cares and understands what they as families are going through. I pray as I write this that this will be the time voices could be heard. Thank you for even taking a moment to read this if you can and see my son's web site I made in hope to reach others and give alittle support if even just emotional. Please have a wonderful day and again thank you and may the Lord smile down on you always and forever holding you in his faith and love.....Sincerely Dezra Burkes & Dalton Sky http://www.geocities.com/daltonsky2000/DaltonSky.html
We need someone to pay attention to the children.....My son and myself feel as tho time is not on our side anymore. I can see this when I look into his soft little blue eyes. He is growing more and more tired all of the time. We need to expose this disorder that leaves little babies to spend life everyday every sec of everyday with the eqivalent of second degree burns that come from something as simple as a hug or a kiss. All we are trying to do is draw attention to the children for we can handle suffering and they really dont understand!!
[This message has been edited by Dezra and Dalton Sky (edited 06-26-2001).]
[This message has been edited by Dezra and Dalton Sky (edited 06-26-2001).]
We need someone to pay attention to the children.....My son and myself feel as tho time is not on our side anymore. I can see this when I look into his soft little blue eyes. He is growing more and more tired all of the time. We need to expose this disorder that leaves little babies to spend life everyday every sec of everyday with the eqivalent of second degree burns that come from something as simple as a hug or a kiss. All we are trying to do is draw attention to the children for we can handle suffering and they really dont understand!!
[This message has been edited by Dezra and Dalton Sky (edited 06-26-2001).]
[This message has been edited by Dezra and Dalton Sky (edited 06-26-2001).]
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dancefreak87
03-08-2007, 12:48 PM
Hi, I can't believe I didn't see your post sooner, but I wanted to let you know that I am a 20 year old female living with EBS. There is so much support available for you. If you ever need to ask anything about the disease, please feel free. God bless and good luck, i know it's rough.