‘He deserves a chance’: Uncle plans community benefit for nephew
At only four months old when most babies are playing with their toes, Cayden Perry had his first seizure.
Perry is a 7-month-old little boy with big blue eyes and a wide, toothless smile.
While he lives in Ohio, Cayden’s story is hitting home in Destin.
"He deserves a chance, and their family deserves a chance at some sort of a Christmas together," Cayden’s uncle Darrell Bortmas told The Log.
Bortmas, an employee at Legendary Marine in the parts department, is throwing a benefit in his nephew’s name on Sunday, Dec. 16, starting at 2 p.m. at Lucky's Rotten Apple on Mountain Drive in Destin.
At 4-months-old, Cayden, who is about to celebrate his first Chrismas, was life-lighted to Akron's Children’s Hospital in Ohio where, after a number of tests, was diagnosed with tuberous sclerosis, an extremely rare genetic disorder.
Perry is prescribed a concoction of medicine that costs more than $11,000 a month — some of which works, some of which doesn't. Some of the medicine he’s taking has only been on the U.S. market for about one year.
There is no "cure" for tuberous sclerosis — even removing all of the tumors doesn’t guarantee perfect health as they may or may not grow back.
Because of the tuberous sclerosis and the seizures it causes, Cayden’s other organs are being degraded.
"He blew a blood vessel in his eye during a severe seizure recently, and he has so many tumors in his kidneys the doctors can't tell how many he has now," said Bortmas.
Now Bortmas is asking for support from the Destin community he knows and loves.
Bortmas said the company Great Boars of Fire is cooking for the benefit and donating their time — driving more than 10 hours from Illinois to do their part.
Live music will be provided by Nobody's Outlaw beginning at 3 p.m. Raffles and door prizes will be awarded, and for only $35 you can enjoy slow smoked Boston butts.
"If possible, we want to pre-order all of the food by Saturday, Dec. 1," said Bortmas. "Our goal is to sell about 150 tickets; right now we've only sold about 55."
If you can donate a door prize, money or you would like to come to the benefit at Lucky's please visit Find a Cure for Cayden on Facebook or call 368-1014.
"I've never actually met him," said Bortmas. "He's family though; how could I not help? I would help even if it wasn't family."