BRANFORD, Conn. (WTNH) – Game time at the Herzogs is filled with silliness and festive cheer. Little Max has a plan.
“I go shopping with Daddy, I got some holiday presents,” says the rambunctious 4-year-old with a rare disease.
“Max was born at 11 pounds and he came out like superhero and looked like a superhero at 6-months-old,” says his dad. But, right around that time, parents Jesse and Stephanie found out their son had Duchenne muscular dystrophy, a fatal, neuromuscular condition that impacts boys.
“We had this beautiful baby boy, all of our hopes and dreams for him were crushed in literally a day,” says Stephanie. The Branford family decided to live every day to the fullest, until the genetic disease started to change their lives.
“For the longest time, I wouldn’t allow myself to think of him getting married or having a life of his own because that wasn’t in the cards,” says Stephanie.
But a chance meeting with a passionate advocate changed everything. “There’s a lot of rare disease and a lot of people who need help,” says Rich Horgan, who has a brother with Duchenne. He founded non-profit Cure Rare Disease (CRD) which is funding work at Yale School of Medicine.
“People are much more familiar with a small molecule, a pill you take, for instance. See, this is very different,” explains Horgan. “It’s a drug that’s designed for you based on your genetics.”
“Often times hope is sort of beyond grasp,” he continues. “To be totally honest with you, I’m tired of that. I’m tired of hope being out of grasp. I want more than hope. I want an answer.”
So, hopefully in the next few years, Max, who now has some trouble getting up and down stairs, will be one of the first boys to undergo this innovative gene therapy.
“He’s an amazing little boy and his sisters adore him,” says Jesse.
Meanwhile, the Herzogs have gone public, turning to their community for help raising funds and awareness for CRD.
“We have very full hearts, I’ll put it that way, very full hearts,” says Stephanie.
Fear has transformed into resolve, as the family now dreams about Max’s future.
“The plan is – not the goal – the plan is to cure this kid and once we cure this kid, we’ll dedicate our lives to curing every kid with this disease,” says Stephanie.
Web Extra: Families collaborating with non-profit Cure Rare Disease
Jocelyn Maminta brings you into the lab to learn more about this groundbreaking work. Click here to watch.