Posted: 03/22/2009 01:00:28 AM PDT
On a blustery morning, the 5th Annual NF Steps 5k run/walk kicked off, with hundreds of participants in running shoes ready to take a jaunt around the lagoon. While some were seasoned and competitive runners, others were looking to take a slower pace, pushing baby strollers along the route. But all were there to raise money and awareness for the cause.
One parent who knows the challenges of dealing with a child with NF, is resident Debbie Bell. 's son Carter, 7, was diagnosed as an infant and she felt alone in a battle against a disorder that her family knew little about.
NF consist of three genetic disorders most known for causing tumors throughout the nervous system. These benign tumors often grow, creating life-threatening conditions as they interfere with essential bodily functions.
Learning this, the family began to network with other families dealing with NF, and soon created Neurofibromatosis, Inc. . Debbie Bell is the president of the nonprofit that serves as a resource to help families navigate the difficulties of NF, and the run/walk serves as a major fundraiser for the organization.
Families across the state have joined in the crusade to raise awareness of NF, and that was evidenced by the crowd at on Saturday.
Wearing a blue T-shirt with the lettering, "Team Action Jaxon," Maria Powell addressed the crowd before the event got under way, pleading for them to write their legislators about their struggle with the disorder and to bring more attention to it.
Powell and her family traveled from their home in Chowchilla to be a part of the event after a grueling week of doctor's appointments for her 7-year-old son Jaxon, who was diagnosed with NF at age two.
But before the Powell's could take part in the fundraiser, Jaxon had a slew of doctor's appointments beginning on Monday with a visit for Jaxon's orientation and mobility. Tuesday, he had chemotherapy in Fresno. Thursday, was a trip to Los Angeles for an MRI and Friday he had an appointment with the eye doctor.
Jaxon has been on chemo-therapy for three years and tumors on his optic nerves have left him legally blind.
"All this and you know, the thing that kept us going was knowing that we got to be a part of this event today," said Powell.
Powell said that although they live in a small town, they have met a handful of others dealing with NF.
Advocates say that the disorder is not as rare as people may think and it occurs more often than much more publicized conditions including cystic fibrosis and Huntington's disease.
Powell said that long waits at the doctors' appointments has become her time to write letters to elected officials asking that more attention be given to the disorder.
Earlier in the morning, with tears in her eyes, Powell said to the crowd, "Five years ago I was one of those people who didn't even know the word Neurofibromatosis."
Powell's message perfectly echoed Neurofibromatosis, Inc.'s theme for 2009 -- Striving For Awareness.
"Who knows which one of you will inspire others to take up the cause," said Powell. "Share the message. Together we can beat this. We can make a difference."