Help Ella fight EB

Ella was born with a rare skin disorder called Epidermolysis Bullosa. EB is a genetic skin disorder that causes blistering to the skin with the slightest bump or lightest friction and is extremely painful. It can be life threatening due to the high risk of infection. Ella has had medical needs since day one and the needs continue even as she is getting ready to turn 16 in February. Ella’s most current setbacks have caused significant medical care. She has been in and out of the hospital as they try to figure out how to help her skin. This also includes a stay at the Children’s hospital in Cincinnati to be treated by the experts at their EB clinic because the team here in St Louis could no longer meet her unique needs. To know Ella is to know what a fighter she is. Ella has never let her disease stop her even though she can not walk most of the time. Ella can be seen walking with knee pads on her knees to keep up with kids in PE or to try and be a regular teenager. Ella swims competitively which has been an unexpected benefit to the quality of her skin and is desperately wanting to figure out a way to drive. Due to Ella’s recent medical needs, her mom has had to take unpaid time away from work to travel to Cincinnati as well as be with her during her other hospital stays in St Louis. The burden of her medical expenses combined with time off work is taking its toll. Ella’s new itch medicine alone may be as much as $1600. She has been on antibiotics and pain management meds her entire life. She gets around mostly by an electric wheelchair at school to be an efficient traveler. This in turn has also caused expenses to adapt the mini van to haul her chair. The van will also need adaptations down the road to assist Ella with driving. Her family has insurance however the copays, deductibles and out of pocket expenses are getting to the point where the family has some difficult decisions ahead of them. Ella is truly an inspiration to anyone who knows her. She lives in constant pain but just keeps fighting. Please consider making a donation to help cover some of Ella’s medical expenses and relieve some of the burden for her family.
  • Glenn Hooker  
    • $50 
    • 35 mos
  • Jennifer Hoskins 
    • $50 
    • 36 mos
  • Laurie Kornfeld  
    • $100 
    • 36 mos
  • Lynn Hoffman 
    • $125 
    • 36 mos
  • Paula Kopmann 
    • $50 
    • 36 mos
See all

Fundraising team: Team Ella (3)

Julie Lackey 
Organizer
Raised $625 from 8 donations
Washington, MO
Gwen Furjes 
Beneficiary
Kim Bay Culleton 
Team member
Raised $375 from 4 donations
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