Through The Eyes of Jesus: Go Twins!

Wednesday, April 24, 2013

Go Twins!

Thanks to HopeKids, we were able to attend a Twins game last night. It was AJ's first game and he loved it. The Twins lost but AJ really got into the cheering. At the end of the game he yelled, "Way to go Orange (Miami Marlins), You Lose Blue (Twins). He loved the opportunity to play with the other children that were so accepting of his bandages. We were thrilled about the warmth that the suite provided - still too cold for us to sit out in the Minnesota weather and watch a ball game. AJ stuffed himself with his favorite food; cotton candy. He ate almost an entire bag and never got sick. We didn't arrive home until 1:30 am but it was so worth it!

Thank you HopeKids

From all the Fischers

No comments:

Post a Comment

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.