Through The Eyes of Jesus: This world is not our home...

Monday, May 9, 2011

This world is not our home...

Today our friend Amber left this world. As her Mom stated, "Amber's life has finally begun." Amber was 11 years old and had RDEB. We met her at the EB conference last year. Amber knew the Lord and her family has the assurance that she is with Jesus. Please pray for them as they adjust to life without her.

Philippians 3:20-21 (Today's New International Version, 2005)

But our citizenship is in heaven. And we eagerly await a Savior from there, the Lord Jesus Christ, who by the power that enables him to bring everything under his control, will transform our lowly bodies so that they will be

like his glorious body.

Goodbye Amber, but only for a time; we will meet again.

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.