Through The Eyes of Jesus: Thank You for Your Help!

Monday, February 20, 2012

Thank You for Your Help!

Hello Everyone,
I wanted to send you an update on our fundraising project that will send us to the EB conference. Our goal is $2620 and your donations have brought in $1,940. Thank you so much. We have made our reservations and are excited about the opportunity to attend. If anyone has questions about our trip, please feel free to ask; we are still accepting donations. They can be sent through PayPal or mailed to our home address.

AJ continues to do well considering his inability to eat. He continues to express his desire to get this "fixed". I called the doctor today and told her that I will be bugging her about getting his esophageal dilatation scheduled. This has been much too long of a wait.

We do have an appointment this week with the dermatologist. It is his major six month appointment where he will be seen without any bandages and they will photograph all of his wounds. He doesn't mind because no one really touches his skin. We give him a bath in the early morning and then he puts on clothing that looks like a newborns gown. His legs and feet zip into it so that he does not tear his skin. It is very soft and looks like a big bag that is zipped up the front. At the end of the appointment we bandage him right back up in the office.

Later in the day AJ will have a bone density scan. Kids with EB can have poor bone density and we hope to use the results of this scan to give us a baseline with which we can observe any future changes should he need treatment.

Thank you again for all of your prayer and financial support.

Barbara and AJ

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What is Recessive Dystrophic Epidermolysis Bullosa?

It is a rare genetic disorder that causes AJ's skin to blister and tear with the slightest friction or contact. He can have severe blistering anywhere on his skin. Internally his mucus membranes and organs are affected. Due to blisters in his mouth and throat, he eats very little by mouth and receives his primary nutrition through a gastrostomy-jejunostomy tube (G-J) that is placed in his stomach and small intestine. He struggles with breathing at times as blisters form in his mouth, throat and upper airway. There is no cure for EB. AJ will live with constant pain and scarring. With each tear to his skin, the skin scars and eventually limits his movement. His fingers and hands will begin to fuse and curl together. The only treatment for EB is daily wound care and bandaging. Each day we unwrap his body, bathe him, treat his open wounds and then wrap him up all over again. AJ has many medical providers that help us with his care. He has a power chair that he uses in the community to reduce the friction on his feet. He also takes many medications to reduce the acid reflux that damages his esophagus and to help with the intense itching that EB creates. Children that do not succumb to infection, malnutrition or airway complications develop an aggressive form of skin cancer in their teen years. Children with AJ’s disorder are often referred to as, “Butterfly Children” as their skin is as fragile as a butterfly’s wing.