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To any passerby, Baylee Wheeler looks like your typical 6 year old little girl with a beautiful smile, stunning eyes and a loving devoted family. But behind that smile, hides intense pain. Baylee has two rare conditions… Isolated Natural Killer (NK) Cell Deficiency and Ehlers-Danlos Syndrome. Natural Killer cells are a special type of white blood cell that help recognize and then destroy viruses and cancer. People with Isolated NK Cell Deficiency are at greater risk for infections and may have an increased risk of developing cancer. At this time, there is no specific treatment for NK Cell Deficiency besides treating the infections, which generally takes longer. Ehlers-Danlos Syndrome (EDS) involves the connective tissue. The major symptoms of EDS are joints dislocating easily along with muscle cramps and pain.
Baylee suffers the cramps and pain daily, often crying and screaming herself to sleep.
The Wheeler’s have found an amazing set of Doctors in Ohio who are able to treat the whole of Baylee’s complex medical needs. The family lives in Jamestown, KY but travels to Cincinnati Children’s Hospital for her extensive appointments. The week of December 9th, Baylee is scheduled to see Rheumatologists to address her EDS and have extensive blood work and testing for the NK Cell Deficiency. If all goes well the family will return home on time, but there is always a strong possibility they could be asked to stay longer for more tests and treatments. Unfortunately, the Ronald McDonald house is booked those dates so the Wheeler’s will have to rent a motel room.
Like most families with an ill child, the Wheeler’s have been struggling financially. Recently Baylee’s father lost his job of 16 years, leaving no extra funds for travel, but these week long doctor visits to Ohio are imperative. If Baylee misses this visit, it could take 2 to 4 months to reschedule the appointments.
Ride to Give wants to get Baylee to Ohio! A family friend started a fundraiser which they will suspend while the Ride to Give ARMY goes to work on raising funds for hotel, food and other travel expenses.
As a member of the Ride to Give Board of Directors and a dedicated member of the RTG Army, our beloved Barbara is taking part in her FIRST running race Thanksgiving morning! She will be running “The Rockland Road Runners’ 5 Mile Turkey Trot,” (as will Dave) for sweet Baylee, so she can get to Ohio...and keep her appointments. WE CAN DO THIS!
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