 Jesse is 5 years old and has neurofibromatosis (NF1). This means he has multiple café-au-lait spots, many small tumors, at least 1 more complex tumor, a brain tumor, low muscle tone, nerve pain across his shoulder blades, and chronic/severe nerve pain at the back of his head. Even though one of his NF symptoms is a brain tumor, Jesse’s worst NF manifestation is the head pain. He has had surgery to help with the pain and even though it is much better since surgery, raging cries of pain do not begin to describe what he has gone through and still occasionally does. He takes pain medication daily and he is only five years old. This past summer, someone told me that Jesse must have walked into a nest of mosquitoes, he had bites all over him. My reply, “no, those are tumors”.
In a news interview not long ago, “you go home and you cry, but eventually you have to get back up. You have to fight. You can’t just sit home and take it, and watch [this disease take over your baby’s body]”. Today, the Children’s Tumor Foundation is what offers me hope. They are the organization leading the research to find the treatment and the cure for NF. We participate in Racing4Research, NF Endurance Team, and NF Walk. All of our fundraising money goes directly towards research. There is a reward for the “NF Hero” who meets or exceeds a set fundraising goal each year for research; the NF Hero’s name goes on the side of a racecar at the Rolex 24 at the Daytona International Speedway, an endurance race, much like the endurance required living a life with NF. The NF Hero is invited to come to the race where there are photographers everywhere, time with the drivers, a parade with the car onto the track; everything to make the NF Hero feel truly special. By being involved in these programs, he is no longer only an NF patient and sufferer. He is an NF Hero. He will not only remember his childhood spent in a hospital or on constant pain medication – he’ll remember the amazing feeling of being the star at the Daytona International Speedway, sitting high upon a driver’s shoulders. Like we were all just there for him, acknowledging his brave battle.
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