Kylie's Comeback
Donation protected
Our friend, 28-year old Kylie Wilson, is fighting an extremely rare and crippling condition known as “disappearing bone disease” or Gorham-Stout Disease (GSD). For Kylie, this means her ribs and spine have disappeared or fractured in multiple places. This resulted in a spinal cord injury and paralysis from the waist down. In recent months, Kylie has been through a number of surgeries to repair the damage and is receiving the only known medication for GSD to slow bone loss and potentially regenerate some of the bone.
The good news is, Kylie is receiving care for this rare condition and she is being monitored by specialists on both coasts who are studying the disease. She recently moved back with her parents to get support with day-to-day activities, wound care, and visits to doctors in Los Angeles.
The bad news is, none of the care outside of the hospital is covered by insurance. Both small things (specialized medical transport) and big (in-home care to provide basic movement, medical and hygiene assistance) are expenses that will be handled entirely out of pocket.
Kylie has the support of her family – her parents are retired educators and have been there every step of the way. But our hope is that Kylie and her family can continue the recovery process with a little help from us to lessen the burden of the soaring financial costs required to keep her safe and comfortable.
All of the money collected through this GoFundMe will be given to the Wilson family to offset the costs of in-home care assistance – simple activities such as helping to get Kylie in and out of bed, the bathroom, the medical van, etc. can be monumentally challenging with the physical damage caused by GSD. Your donation means Kylie will receive the care she needs, plain and simple.
Please join us, Kylie’s friends, in reaching our goal to support the Wilson family in this difficult time and help with Kylie’s comeback!
**We asked Kylie to share her story in her own words… please click on the "updates" tab to read it.**
The good news is, Kylie is receiving care for this rare condition and she is being monitored by specialists on both coasts who are studying the disease. She recently moved back with her parents to get support with day-to-day activities, wound care, and visits to doctors in Los Angeles.
The bad news is, none of the care outside of the hospital is covered by insurance. Both small things (specialized medical transport) and big (in-home care to provide basic movement, medical and hygiene assistance) are expenses that will be handled entirely out of pocket.
Kylie has the support of her family – her parents are retired educators and have been there every step of the way. But our hope is that Kylie and her family can continue the recovery process with a little help from us to lessen the burden of the soaring financial costs required to keep her safe and comfortable.
All of the money collected through this GoFundMe will be given to the Wilson family to offset the costs of in-home care assistance – simple activities such as helping to get Kylie in and out of bed, the bathroom, the medical van, etc. can be monumentally challenging with the physical damage caused by GSD. Your donation means Kylie will receive the care she needs, plain and simple.
Please join us, Kylie’s friends, in reaching our goal to support the Wilson family in this difficult time and help with Kylie’s comeback!
**We asked Kylie to share her story in her own words… please click on the "updates" tab to read it.**
Fundraising team: Kylie's Friends and Family (5)
Liz Philips
Organizer
Camarillo, CA
Kathleen Wilson
Beneficiary
Aerin Wilson Clark
Team member
Corey Wilson
Team member
Janice Holmes Fostakowsky
Team member
Kim Lisagor Bisheff
Team member
