- February 8, 2025
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Around 10 a.m. on Sunday, Aug. 20, 52 bikers got on their motorcycles and headed out for a full-day trip to support a good cause.
The men and women on motorcycles had gathered in Port Orange to ride and raise money for a a 6-year-old girl with a life-altering disease. In June of 2016, Zoe Adams was diagnosed with Sanfilippo Syndrome, a metabolic disorder that causes brain damage. According to the Sanfilippo Children's Foundation, most individuals diagnosed never reach adulthood.
According to her parents, the little girl can no longer converse and can't ask questions. Zoe's mother, Kim Adams, said her daughter will eventually stop walking—she already has to sit in a stoller to go anywhere. However, because regular strollers are too small for the 6-year-old she has to use a medical stroller. Adams said further down the road her daughter will eventually be confined to a wheelchair and will only be able to eat with a feeding tube.
"It's like childhood dementia, so she's already forgotten a lot of things," Adams said. "She'll forget to talk and walk and she'll bedridden. Her brain will go first."
Adams said children with Sanfilippo Syndrome usually don't live past their teenage years. According to Kim and her husband J.J., the disease affects one in 70,000 children. There are a total of four that the Adams know of in Florida.
J.J. said the family is not only fighting to find a cure but trying to find some kind of treatment plan for their daughter.
The ride
When Constance Jones, the founder of Children R Our Future of Volusia County, found out about the Adams family she knew she had to do something. Jones, also known to many as "Mama C," is part of a biking community and saw this as the way to help raise money for the family.
She decided to hold poker runs for the local bikers to be a part of and raise funds. This will be Jones' second run for the family and plans to do a third during Biketoberfest. Participants paid $10 per bike or car with the run starting and ending at the Roadside Tavern.
Bikers rode 126 miles on a route that took them to different checkpoints where they tossed dice instead of drawing a playing card at each stop.
Jones, who has done poker runs for other children, said she has been able to get around 400 riders to participate in her past charity events.
Jones said she not only wants to raise money during the event but educate people about the disease and what the family is going through.
"It's an awareness ride because nobody knows about this disease," Jones said. "We raise money for the family and what the family needs, what the child needs, and I keep up with that family like they're my own children."
Zoe's future
Zoe's parents, who also participated in Sunday's run, are trying to have their daughter accepted into a clinical research study for the disease. The study works on a lottery system. Zoe is currently not on any treatment, though she has taken cannabidiol oil, known as CBD oil, in a gummy form, which her parents said has helped her sleep more. Before this she only slept two hours a night.
According to J.J., Zoe is eligible for two treatments that are coming out the first quarter of 2018. The family is also trying to get an appointment with a doctor at a children's hospital in Ohio.
"We're doing everything we can to raise awareness and money for a cure," Kim said. "At this point I don't want to go through her life and say, 'wow I wish I would have done that, maybe it would have made a difference.' At this point I want to do anything that makes a difference."
Donations can be made at gofundme.com/zoesjourneySS.
