CRESTVIEW — A local health club has joined other southeastern “Fight for Finn” fundraisers to help a Chattanooga, Tenn., 2-year-old combat a rare form of epilepsy.
June is “Fighting for Finn” month at Perfect Fit 24-7. The South Ferdon Boulevard gym is selling theme T-shirts, donating half of membership processing fees, and accepting donations to raise money for Finn Smartt’s treatments.
Perfect Fit manager Iris Miller said gym owner Brian Hughes became familiar with Finn’s disorder and decided to help his parents, Crystal and Elliott Smartt.
“This is something that he wanted to do for them,” Miller said. “The little boy has already gone through several surgeries and he will have more to go through.”
Finn soon will receive his fifth brain surgery. In addition to Dravet syndrome, the boy was born with a Chiari malformation, a structural defect in the back of the brain.
In addition, he has had surgery for hydrocephalus, commonly known as “water on the brain,” a buildup of too much cerebrospinal fluid in his brain.
FREQUENT SEIZURES
Crystal Smartt said her son has frequent seizures, and she worries about the syndrome's common result: sudden, unexplained death in epilepsy, which often happens while the victim is asleep.
“So since we can't do anything to stop the seizures from happening, the only thing left to do is to keep him safe,” Smartt stated on Finn’s GoFundMe page. “We have him sleep with us in our bed. That way, we do not miss a seizure from happening.”
Smartt said among expenses the family faces is acquiring a seizure-alert dog, which typically costs $12,000 to $15,000.
“Right now we are looking for a regular dog similar to a German shepherd so that he can have a companion,” she stated.
“We’re trying to do as much as possible for him as we can,” Miller said.
“We have no idea what the future holds for ‪#‎SuperFinn, or what the next day, hour or even minute might bring,” Smartt stated on her Facebook page, “but one thing is for sure: being his Mama has taught me more lessons then ever imagined! His fearless but sweet heart makes me so proud.”
Editor’s Note: Perfect Fit 24-7 owner Brian Hughes is unrelated to News Bulletin writer Brian Hughes.
FAST FACTS
•Dravet syndrome, or severe myoclonic epilepsy of infancy, is a rare, catastrophic form of intractable epilepsy that begins in infancy
•Initial seizures are often prolonged events. At 2 years old, other seizure types emerge
•Individuals with Dravet syndrome face a higher likelihood of sudden unexplained death in epilepsy
•Currently, individuals with these disorders face a diminished quality of life. Current treatment options are limited and prognosis for these children is poor.
Source: www.dravetfoundation.org
WANT TO HELP?
Perfect Fit 24-7 is raising funds throughout June to benefit 2-year-old Finn Smartt’s medical treatment expenses. The gym will donate half of all new-member processing fees and all revenue from sales of $20 “Fighting for Finn” T-shirts.
Those who purchase a T-shirt or donate $10 or more are entered in a drawing for a $200 prize package. Visit 4381 Ferdon Blvd. S., or www.perfectfit24-7.com, or call 398-8497 for more information.
Donors can also contribute toward Finn’s medical expenses at www.gofundme.com/fightingforfinn.
Email News Bulletin Staff Writer Brian Hughes, follow him on Twitter or call 850-682-6524.
This article originally appeared on Crestview News Bulletin: Crestview gym joins Fighting for Finn regional fundraiser