Through The Eyes of Jesus: Praying for Andria and her family

Wednesday, April 6, 2011

Praying for Andria and her family

Please pray for our friend Andria. She was AJ's night nurse for the first two years of his life. She faithfully sat up night after night, rocking him, administrating medication and keeping his oxygen stats where they needed to be.

It is with deep sadness that I share the news of the death of Andria's husband Karl. They were married less than nine months ago and he passed away suddenly at the age of 25. We are so saddened by Karl's passing and the loss of Andria's husband and father to her three children. Please pray for Andria, and her children.

II Corinthians 1:3

Praise be to the God and Father of our Lord Jesus Christ,

the Father of compassion and the God of all comfort.

Praying their hearts will be comforted.

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.