Name: Wesley Tyler Stone
Form of EB: Unknown after 3 biopsies
Born: July 31, 2003
Residence: Savannah, Ga
About Wesley from mom Heather:
Wesley made an entrance into the world about one week before we were expecting him. He made his way via c-section. The fact that I had to have
a c-section is actually our own little blessing now that we look back at things. He was born looking perfect. It was very shortly after we
brought him home from the hospital we started to notice some odd things popping up. Wesley had a few marks here and there that the doctors told
us not to be concerned about. He also had very thin yellow crusty nails that bent upwards. We were also told not to worry about this either.
About a week after he came home the first actual blister popped up on his
leg, and once again we were told not to worry. They thought that he had a
staph infection so he was treated for that. A couple of weeks later, no wounds had healed his finger nails were starting to fall off and we had
As time went along, his skin had a little more break down but not to bad. He started to become very active, he is now his own worst enemy.
It took us a few months but we finally got his skin under control. It took a large amount of begging and pleading but we finally got set up
with a wound care specialist. He got us going down the right track. After extensive research I got a better understanding of what Wesley was
going to be dealing with. I researched about all the types of EB even though every doctor told us that he HAD to have simplex. The doctors
told us he had to little break down be any other type. Well skin care
When he was about four months old his cry became very hoarse and and
his left nostril became completely occluded. We were told he was starting
the teething process and probably just had a cold. Well about 30 doctor appointments and three months later his strider was still here. At this
point Wesley had been in and out of the hospital several times. He did antibiotics, oral steroids and breathing treatments, nothing worked. He
had several CT's and x-rays, everything showed up clear. Finally he got
He discovered blistering from the tip of his nose all the way to his voice box. There was approximately an opening the size of a pin hole left. We were later told that if Wesley had not had the operation when he did, he would have quit breathing in a matter of a month or so. It was very hard to see Wesley after the surgery with tubes running out of all of his crevices. He was very grumpy when he finally came to. I began to regret having the surgery because I thought I had taken away my son's happiness. Again I was very wrong.
Wesley is still recuperating from his surgery. It has been a few weeks, but he is already eating better, sleeping better and most
The world of EB is a rather intensive one, that takes a large amount of adjusting. Wesley is my first born child and has taken a lot out of me.
I do get rather stressed out sometimes but I try to never let him know, and make sure that he knows he will never be a burden. He just takes up a
little bit more of my time. I miss the sound of his cry but my emptiness is outweighed by the sight of his smile. I could not have gotten through
all of this if it had not been for my more than supportive husband,
Be Brave. Even if you're not, pretend to be. No one can tell the difference.
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