Dave Ferrell took a breath and looked back to where his son was sitting smiling behind him in the chair attached to his bicycle. He felt his heart contract and smiled back then put on a fresh burst of speed and kept going.

“For me it’s the most rewarding experience ever,” said Dave Ferrell, 56, of Middletown, New Jersey. “Just seeing Blake when he has that huge smile on his face is very uplifting. That’s when I know it’s all worth it.”

Nineteen years ago Ferrell and his wife, Colleen had a son named Blake, who was born with a very rare genetic disorder. There is currently no term for the disease which is a mutation in what is known as the “stxbp1” gene.

“There were only 40 other cases in the world when Blake was diagnosed,” said Ferrell. “He’s physically and cognitively challenged as well as non-verbal.”

Due to his genetic disorder, Blake communicates his desires through pictures on an ipad, and when he was younger could have up to 300 seizures per month. His seizures can now be managed with the help of the NYU Epilepsy Center and a “rescue medication” is always on hand in case he has a severe seizure.

Despite all of this, Blake is no stranger to his community and even sports. Ferrell, with numerous relatives living in western Pennsylvania, relies on the generous support of his wife and countless others and enters with Blake in triathlons in several states.

“We like to keep him active and involved in the community. Eight years ago I saw a man in Boston pushing his kid in a race and decided I was going to do that with Blake no matter what anyone said.” said Ferrell.

Following this decision, Ferrell and his wife made some calls and invested in getting Blake a special wheelchair, hitch to attach it to a bicycle, and a boat that Ferrell could pull behind him in the triathlons.

“It took some time to get used to pulling the equipment and I was in no kind of shape for these things when we started,” said Dave Ferrell. “Training was hard but during races, with Blake behind me, I felt no pain because I was completely focused on getting him across the finish line.”

The first triathlon this father son pair participated in was in Long Bridge, NY, and the pair finished with a time of four hours.

“We’ve took part in more than thirty triathlons in the past eight years and about 30 or 40 10k and 5k races as well as some half marathons. In all that time we’ve always been slow, but never taken last.” said Ferrell.

In spite of his condition, Blake does not lack heart.

“He smiles the whole way through the race and because of that smile I’ve set us a goal.” said Ferrell. “I want to still be doing races when my age has a six in front of it and at least one when my age starts with seven.”

Ferrell’s family and friends are proud of what the two have accomplished thus far and what they are doing has touched the hearts of many.

“I’m really astonished by what they’re doing, but in the best way possible,” said Dave Ferrell’s cousin, Patty Buffers, of what he has done with Blake. “I keep up with how they are doing through Facebook and online articles, and I know that every one of our family is proud of what Dave and his wife have done for their son.”

Dave Ferrell loves having the time he does with Blake and hopes he thoroughly enjoys every race.

“It’s like I get to loan him my body for the day,” Dave Ferrell said. “He gets to do what most able-bodied people would never even try, and for this I’m thankful to everyone who’s helped us over the years.”

If Blake could say something about participating in the races, Ferrell believes it would be “Go faster!”

“I also hope he would say thank you and that he’s having fun,” said Dave Ferrell, teary eyed. “I hope he would assure me that I’m being a good dad, because that’s my ultimate goal.”