Nicky's EB Info World ~ Featured EB parent

Hi, I am Sandy Snell and I live in Somerville Texas, I am happily married and will be married 10 years in June. I am 37 years old and the mother of 2 of the best kids in the world and the step mother of one of the best teenagers ever. I feel really blessed in life even though my little girl Whitney suffers from a mild form of EBS.

I met my husband on a blind date and it was like love at first sight. To us it was like we had always knew one another. I had been through a divorce and through another bad relationship, so when I met Keith it was so nice to feel good about someone again.
I wasn't in a hurry to have kids, yet I could hear that clock ticking because at the time I was 35 years old. After we had been married about 5 years, we started to try to get pregnant. I have a seizure disorder so I was high risk due to my age and my disorder. But I prayed to God everyday that all would work out for us and after about 8 months I learned I was going to be a mom.

Things went pretty well for me, but I was really sick the whole time and lost about 35 lbs. while pregnant. When they did the downs test on me it came back positive and they scared me to death. Then I found out that the test didn't mean my baby would have downs. I was at home when my water broke and we lived about 30 min from the hospital. I didn't think I would make it in time even though Whitney was my first child. They rushed me in and got me in the delivery room and checked me and I was at 2 centimeters. About 5 minutes later she checked me and I was at 9, they had no time to give me anything for pain and in about 15 minutes Whitney was born.

She looked great at birth and was born with a head full of hair. She was so pretty. They brought her to me in my room and I noticed a blister on her ankle. When we got to go home the next day and she got some blisters between her legs and seemed to really keep her face scratched up bad.

As far as EBS goes there was really no sign of any in our family. My brother had a son named Trey. My brother was killed 2 weeks before Trey was born, and he had EBS. That was 15 years before Whitney was born and at that time they told Trey's mother he had bullos. She was not the type to look into it much so we didn't know really what he had or where it came from.
Back to Whitney, my mom kept telling me she has what Trey has. I didn't really want to believe her. Whitney just kept getting hurt everyday. I worked at a day care and people kept asking me if she had chicken pox etc... I kept asking my Doctor about her and he acted so dumb and made me feel so stupid and kept telling me nothing was wrong with my baby when I knew there was.

So finally one day I had left daycare and took her for a checkup and once again he assured me she was normal and never even got me to take her out of her carrier. In fact he poked her with a ink pen and said she does not have chicken pox she is fine and left the room. I returned to daycare and put her in the baby swing and in about one minute she was screaming and she had no skin on her legs from her knee down. I was crying and she was crying and so my daycare boss called my Doctor office back and told them what was up and that I was on my way back. I was about 1 block away and before I got there Whitney's Doctor left and went home. I got in there and I was holding her up for all the workers to see, crying telling them something was wrong with my baby and why would no one help me. Its a small town and everyone knew us. I had everyone in there in tears. So they asked if I wanted to see another Doctor. My words were Yes If he give's a shit about my baby and will help us.

They put us in a room to see Doctor Smith, he walked in and took one look at Whitney and said: "Sandy, something is causing this, she needs a specialist." So he got me to one the next day and of course then all the tests started. Whitney was also told that she had bullos, but the treatments didn't work. They then sent us to Galveston to grand rounds where 100's of Doctors come in and look and learn. Then Dr Levy of Houston came in, he did a skin biopsy and they said she has a very mild form of EBS. I don't know which form, but she mostly gets clear blisters on her feet and gets skinned up really easy. But if I keep her in long pants and long sleeves and socks she does really well and leads a very normal active life with lots of owies.

Whitney could pretty much wear diapers and pull ups all her life with no problems. She does keep a rash on her hind end that we fight every day and use lots of zinc oxide on it. Most of her life she goes in sock, but when she has to wear shoes we try and find her some really soft one that will not make blisters and make the toenails come off. So far the soft leather mocks are our best choice.
The worst problem we have since Whitney has mild EB is her skin pilling off from a bump or a fall. I had to stop wearing rings and keep my finger nails cut short to keep from hurrying her all I can. She is a very happy child and will start School soon. I know that some forms of EB are very bad and hard on kids. But I think Whitney is very happy and glad to be in this world. I hope she will get to do every thing in life her heart desires.

Whitney just turned 4 years old January 2nd, 2003 and she still just weighs 31 lb. She is below the 5% on the weight charts, but I think this is normal for most EBS kids. Whitney has no problems eating and can eat just about anything she wants even chips and stuff and we have no webbing of the hands and feet and not much scaring. One of the biggest problems we are having right now is with her teeth. They are very brittle and chip easily and don't have much enamel on them.
I am trying to get Whitney on SSI but have just found out I was turned down and I plan to fight them. She has a speech problem that I don't know if it is EB related or not. But we are working on all this. My biggest future worry is when she starts to school which will be soon. I worry about the kids being mean to her and rather she can keep up with them or not. But I will do my best to let her know she is very loved and can do what ever she wants to do.

I recently wrote the office where we had all the trouble and thanked the ladies for their help and thanked Dr Smith for helping me and asked to give Dr Heckler the enclosed info I sent on EB so that maybe next time God forbid an EB child comes to him he can help them instead of turning his head and making the mother feel like she is crazy. I have yet to hear a work from them. It's really sad.

I have learned a lot about Whitney's skin and her EBS and I am always willing to learn more and help others all I can. I pray every night for a cure so all EB kids and adults will be cured and I hope someday to meet other EB adults and kids so Whitney will know she is not alone. I have had my bad times with EBS even though Whitney has a mild form and I am not real close to my brothers' widow so I have had to learn on my own. I learned the hard way not to put Band-Aids on the skin and pull them off. I think I have cried more than she has. I love my baby and I would not take anything for her. The only thing I would change if I could is that I would take her pain from her.

Knowing Whitney has a mild form of EBS I don't know how the parents and kids and even adults make it with the really bad types. You guys are very special and God has to be watching over us all. I try to let Whitney live a good life and I let her do anything she wants to and try not to let her EBS hold her back whatsoever. So far so good. I am always willing to learn more and help others. I love these groups like ebworld and I have never been to any support groups but I plan to change that soon. I love talking to everyone out here and all the support is wonderful.

Thank you
Sandy Snell mother of Whitney Snell 4 years old with EBS and mother of TJ Snell who is 16 months old and EBS free.
MY email address is james.snell@att.net I would love to get to know any EBers and would love someday to get to know some in Texas.

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