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Meet Alexander. A brave 4yr. old little boy who suffers from the Worst Disease You've Never Heard of, EB. Epidermolysis Bullosa (EB) — is a very rare genetic connective tissue disorder that affects 1 child out of every 20,000 births. The slightest amount of friction causes their skin to blister or shear off. Internal organs and bodily systems can also be seriously affected by EB. As of today, there is no cure or treatment. Daily wound care, pain management and protective bandaging are the only options available.
Alexander is one of 6 children in his blended family. His mom had 2 brothers, his dad had 2 sisters, and together they had Alexander and his little sister. Caring for a child with EB requires around the clock care - so his mother must stay home with him to care for him. EB also takes a huge financial toll on the family as well. Specialty wound care supplies, medications, ointments, etc - costs thousands of dollars each month - and insurance does NOT cover all of these costs.
Alexander suffers from blistering head to toe, and his feet are especially damaged due to friction from walking. He finally received a wheelchair this year, to help with his mobility without causing further damage to his feet. Currently, his family cannot take the wheelchair out in public. With 6 children, they cannot fit the wheelchair in the back of the minivan - and need to purchase an external wheelchair carrier to hook up to the back of the van. They also need a cover to protect the wheelchair from the outside elements. A dealership in Grapevine has graciously offered to install the wheelchair carrier for free, once they have raised the funds to purchase the carrier. And lastly, they need a ramp to help get the wheelchair in and out of the house, as the front doorway has a raised step and the wheelchair is not able to get through the front door without being picked up.
Please help this family give Alexander the mobility he deserves!! He needs his wheels to get out of the house with his family - and without these items - they currently can not take his wheelchair along.
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