Through The Eyes of Jesus: Praying for Evan

Thursday, January 17, 2013

Praying for Evan

Please pray for Evan, his Mom and sisters. Evan has Junctional EB, a different form than AJ and also very serious.

Here is a picture of him this morning.

Evan had symptoms of an airway that was scarring shut from EB. He went into the hospital today to have it checked. Evan's Mom was struggling with the decision to do an elective tracheotomy. She shared with me yesterday that she was concerned about the loss of his speech if he had a trach. She shared that Even loves to sing and talk. If his upper airway closed and he had a tracheotomy he would have no way to get air over his vocal cords and he would lose the ability to speak or sing.

I am so thankful that Evan is still here with his family. Before the doctors even got started into the procedure today, his airway closed completely and they did an emergency tracheotomy to save his life. His airway could have closed before they arrived at the hospital. Instead it happened in the operating room.

Evan needs our prayers. Prayers to handle the many changes he will need to adjust to. I can't imagine waking up with the inability to speak; especially if you are only four years old. Pray for peace, healing and an that an alternative form of communication be found for him quickly.

Thank you so much for following our blog and for praying for these little ones with EB.

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.