The Race Across America (RAAM) will begin on June 18. I will be part of a four man relay team and we, along with our amazing crew, will race 3000 miles from Oceanside, California to Anapolis, Maryland. On August 3, a team of us representing NF Extreme Endurance will begin a climb up Mt. Rainier in Seattle. Both journeys will be extraordinary and epic - just as my son Jesse's fight against NF.
Bottom line - I am doing this to save my son's life.
Jesse Markland just turned 6 years old and has Neurofibromatosis (NF1). There is no treatment and no cure for NF. Jesse's NF manifestations are: he has multiple café-au-latte spots (coffee colored birth marks), about 20 – 30 dermal neurofibromas (small tumors), 1 plexiform neurofibroma (more complex tumor), an optic glioma (brain tumor behind his left eye), his legs often hurt for an unknown reason, nerve pain across his shoulder blades that causes him to scratch and dig at his skin until he bleeds and scars, and has lived with 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. Raging cries of pain do not begin to describe what he has gone through. He has had to take liquid pain medication 3 times per day, two additional pain pills at night, and has had 4 surgeries to help him with the pain. He is only six years old. His latest surgery has helped incredibly with his pain with a 90% improvement and the great milestone of Jesse now being pain medication free. Not long ago, someone told me that Jesse must have walked into a nest of mosquitos, he had bites all over him. My reply, “no, those are tumors”. They are bulging out of his body... and those are just the ones that we can see.
NF is a progressive disorder so he could continue to get worse every day. We are in a race to get ahead of this horrible disorder before he hits puberty. NF is very hormone responsive so when the hormones of puberty kick in, there is no telling how this will effect him.
There is nothing we will not do and no place that we will not go to continue to raise awareness for NF and to raise funds for the research to find a treatment and a cure.