EB Worst Disease You Never Heard Of

Kahleel is only 20 days old, born on December 28th 2016. He was born with a very rare genetic disorder called EB or Epidermolyosis Bullosa. EB is a skin disease that makes your skin very fragile. So fragile infact it can simply peel or rub off because of the slightess friction. Even clothes can be to harsh at times, the caress and embrace of his parents could actually create enough friction to cause painful blisters that fill with fluid and burst leaving raw unprotected sores, leaving him susceptible to many infections. There is no cure for EB. The only treatment is pain management and bandaging. The pain management and bandages will be needed for life, in fact depending on the type of EB  some patients only have a life expectancy of 25 years of age. Kahleel is currently awaiting biopsy results to determine the type he has but already in his short life he has endured so much suffering and pain. His father is an active member of the US Navy stationed in Bremerton, WA. Him and his wife have been living in a children's hospital in Seattle Washington awaiting authorization to be life flighted to a EB Center in Cincinatti Ohio where they can be close to family and friends for aid and support. Please help this family get to the medical facility that can effectively help Kahleel. Because the disorder is so rare the doctors have not provided the proper care and his conditions has actually gotten worse since he was admitted to NICU on January 4th.  He currently has lost 60% of the skin on his little body. As you can imagine there is so much red tape and financial battles that have prevented this family from getting to the EB center. The family needs to get a medical flight to Cincincati so he can be cared for by the experts who deal with this condition on a regular basis. Please take time to research this disease.. It is in fact "The Worst Disease You Never Heard Of" Then please take time to donate to Kahleel's family and any other families suffering from this horrible condition. This money helps support the family's travel back and forth from Ohio to Washington State, that is not being covered by insurance. It will also help pay for room and board for days, months and weeks of living in hotels and hospitals. It will also cover cost for the expensive special clothing and bandages for Kahleel. It will also go towards medical supplies. Any help goes a long way. Thank you for your support!!



Donations

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  • Kim Ponsky 
    • $100 
    • 47 mos
  • J Wolfe 
    • $250 
    • 47 mos
  • Rosslyn Mays 
    • $25 
    • 47 mos
  • Jalisa McCleskey 
    • $25 
    • 47 mos
  • Maurice Higgs 
    • $50 
    • 47 mos
See all

Organizer

Brandi Smith 
Organizer
Cleveland, OH
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