By Jennifer Fisk
By hosting fundraising events in February, two area businesses working with families of seriously ill local children are not just out to raise money, but also to educate people on how these diseases affect families and what steps they can take to help families in need.
So far, the two fundraisers have netted almost $25,000. But for the families, the opportunity to help educate people about these diseases is nearly just as valuable.
“We want people to know what pediatric cancer is and how it affects family. Not being able to work, traveling back and forth between Chapel Hill, eating out, getting hotel rooms and being away from family is very hard,” said Debbie Williams, the mother of four-year-old Madison, who was the beneficiary of a Feb. 22 fundraiser organized by Coldwell Banker Sea Coast Advantage.
The next day, in a separate event, Surf City Surf Shop, at 530 Causeway Drive in Wrightsville Beach, used part of the proceeds of its annual tent to raise money, and spread the word, about “Team Baker,” which supports eight-year-old William Baker Weatherford III’s fight against a rare childhood disease. The Grand Slam for Madison event raised $20,500, while the fundraising sale for Team Baker brought in another $2,002.
For parents of the children, the goal of the fundraising efforts is as much about raising awareness of these childhood diseases as it is raising money. “Baker” suffers from Metachromatic Leukodystrophy, known as MLD, a rare, genetic, degenerative disease that causes white matter in the brain to disappear. It is a terminal disease and Baker is beyond the point of any effective treatment. It causes the patient to lose the ability to sit, stand, walk, talk, and swallow.
The money raised on behalf of Baker isn’t just going to his treatment, but also to help support a campaign led by his mother Andrea to get the ASRA gene mutation listed on the standard genetic testing panel so that parents can know whether or not they are carriers of this disease.
Organizer Josh Lee said that the Team Baker fundraised shows that “we are blessed to live in a community that is supportive.”
“There is no better community than that of the surf community,” Lee said. “I think we proved that today at the benefit”.
In addition to donations from US Med Express and Trolly Stop, Surf City Surf Shop owner Mike Barden also commissioned a special “Baker Skateboards” brand to help raise money and awareness of MLD.
Madison, a local four-year-old suffering from a rare form of brain cancer, was diagnosed last March with a brain tumor and has been undergoing in Chapel Hill.
“She has courageously fought at every turn in the road since last March and her first brain surgery,” said mother Debbie Williams, a Realtor on the Domin & Schwartz real estate group at Coldwell Banker Sea Coast Advantage.
To help raise money for Madison’s treatment, Williams’ colleague Paul Allsup, the owner of Stadium Batting Cages, set up a “Grand Slam for Madison” fundraiser on Feb. 22 that raised $20,500 for her treatment.
“This is a warm story of individuals, with the full support of the company, coming together to help a local family, friend, and co-worker and a four-year-old girl,” Allsup said.
Williams wanted the fundraiser not to just help with expenses, but to educate the community about the ordeal that families of seriously ill children must endure. As part of her radiation treatment in Chapel Hill, she has to shave her head and wear leads on her head to reach 75 percent of her brain function. Madison’s family must change the lead pack every three days and shave her head so that the packs won’t get wet and irritate her scalp. She must wear a battery pack to stop the cells from dividing so that the cancer will not spread. The money raised from the fundraiser will help with families medical expenses.
“The agents and staff here never seem to miss an opportunity to serve the community,” said Tim Milam, president of Coldwell Banker Sea Coast Advantage. “I have a saying I like to live by. Do something nice for someone every week. Their support for Madison is truly inspirational.”