Wesley

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
another blister. So back to the doctor we went. This was when Wesley's doctor diagnosed him with Epidermolysis Bullosa. He told us this was a minor problem and that he would probably out grow it. He referred us to a local dermatologist. So I left the doctor's office thinking that my son just had really sensitive skin, no big deal. Boy was I wrong.

          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
became part of his daily routine and we thought every thing was under control.

          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
to the point where he could not sleep or eat because he could not breathe. He quit growing and healing and he was on a very steep downward slope. We were sent to the Medical College of Georgia (MCG), with the impression that they planned on scoping Wesley. When we got to MCG we were informed that they planned on traching Wesley. We were very upset
and contemplated back and forth and ultimately decided on going through with the operation. The operation went better than we could have ever hoped. After the doctor perfomed the tracheotomy he proceeded to scope Wesley.

          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
importantly even happier than he has ever been. He has a new level of energy and he has a look in his eyes like he is ready to conquer the world. He will most likely have his trach for the rest of his life. We still do not know what type of EB Wesley has but right now but all of the arrows point towards Junctional.

          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,
family and friends. Wesley has a long road ahead of him but I am certain he will be just fine.

 Heather

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