When a Fort Worth couple found out that their youngest son had a rare genetic disorder, they were prepared to do whatever they could to get him the help he needed.
However, Don and Kimberly Wheatley soon found out that there was very little known about Chiari Malformation. The genetic disorder their son Connor suffers from means the skull is abnormally small or misshapen and causes brain tissue to be pushed into the spinal canal. When looking for a doctor that specialized in treating the disorder, the Texas family found only one located all the way in New York.
“Why New York? I’m not willing to wait until he starts choking on his own spit or develops a cyst in his spinal cord that’s caused permanent damage. Would you? The pediatric neurosurgeons who are up on the latest research for Chiari is a small group,” Kimberly explained in a YouCaring campaign that she started to raise donations for Connor’s costly medical expenses. “Then the Neurosurgeons who also address the Spine issues makes it smaller. Now you have to find a neurosurgeon who will check and use proper technique in the instances of Connective tissue disorders. This led to 1 answer.”
The Wheatley’s brought Connor to New York and were thrilled to finally get some answers and insight into their son’s health issues, however, after a few trips and a surgery to restructure parts of Connor’s brain with titanium, the family is still paying off $100,000 in medical bills. After hearing about their struggles, an organization called Miracle Flights, which has arranged free airfare for over 100,000 patients, reached out to the Wheatleys and offered to pay for his flights to get treatment, including an upcoming trip to New York for another surgery.
“Without Miracle Flights, reality, we couldn’t do it. My boy deserves the best, so this is why we’re doing this,” Don Wheatley said. “Knowing that we can fit in and help with one very expensive piece of the puzzle is highly rewarding,” said Miracle Flights CEO Mark Brown. “So for us to be able to provide this one part of the solution is what motivates us and gets us up every day.”
Watch the entire video below to see how much Miracle Flights has helped this little boy get life-saving treatment.
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[Featured image: YouCaring/Kimberly Wheatley]