Through The Eyes of Jesus: Happy Birthday AJ!

Sunday, December 15, 2013

Happy Birthday AJ!

Today we celebrated AJ's sixth birthday. Oh how blessed we are; that God has given us these years with AJ. We pray that God will give AJ many more years but we know that life with EB is full of unknowns (hey we know life without EB is filled with enough unknowns). Today was hard for AJ in that he had much more pain than usual. I'm not sure why it's worse today but it just is. AJ did enjoy his Angry Bird cake and his friend, Briella, and her parents celebrated with us.

As I thank God for AJ's life tonight, I also cry for a friend, Steve Stearns. Steve and his wife Tammi were friends that we met through our EB family. Tammy passed away this past year, suddenly and without warning. She left behind her preschool daughter, Chloe, and baby Liam, that was born with EB. Tonight little Liam passed away. Steve and Chloe are left behind with Mom and baby brother in heaven. My heart breaks for them. You can read more about Liam and his family here: Liam's Lambs

Life is unpredictable but God is our sure and solid rock. How thankful I am that we have Him to cling to. Please pray for Steve and his daughter Chloe as they mourn the loss of their little Liam.

Barbara

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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.