Duchenne Muscular Dystrophy: The Curran family’s race to find a cure
When Ridgefield resident Conner Curran was diagnosed with Duchenne Muscular Dystrophy, he was four years old.
His parents Christopher and Jessica Curran felt like their whole world was crumbling around them.
But now, two years later, the Currans have taken his diagnosis and made it their mission to help Conner and other boys like him.
“It’s devastating — all your hopes and dreams for your child go down the tube when you first find out,” said Jessica.
“We quickly realized after a couple of months that we wanted to take the negative energy from the diagnosis and turn it into positive action,” said Christopher.
“Time is our biggest enemy.”
Duchenne Muscular Dystrophy is a genetic disorder that causes progressive muscle degeneration — those suffering from the disease have a life expectancy of mid-to-late twenties.
So, the Currans began their race against time and founded Kindness Over Muscular Dystrophy (KOMD) under a larger non-profit called Parent Project Muscular Dystrophy.
Since its foundation, they’ve raised over $250,000 specifically earmarked for Duchenne research — $91,000 of which came from their second annual fund-raising event at Captain Lawrence Brewery last month, with contributions from Ridgefield businesses Tiger’s Den and Chez Leonard.
After an outstanding year in kindergarten, Conner will begin first grade at Barlow Mountain Elementary School in the fall.
“He’s learned to read and write — he’s really smart; he’s just like any other boy in that way,” said Jessica.
“He loves Legos, he loves drawing, hide-and-go-seek. He’s very curious and always wants to know how things work.”
He also has ambitious dreams of being a pilot and a chef — although his culinary talents are still in development.
“He does toast all by himself,” said Jessica.
“He likes to make sweets, like cookies, and he loves watching people cook on TV.”
His parents remain optimistic as they continue their efforts to support research and legislation in the hopes of finding a cure — but sometimes the uncertainty about their son’s future is difficult to swallow.
“We have our moments — ugly cries in the shower,” said Jessica.
“You hear a song or go to a wedding and you’re like, ‘Oh my God, will this be him?’”
“Your heart breaks for all these little moments,” added his dad, Christopher, “at the playground, at the doctor’s ...
“They just slowly lose ability after ability until they’re paraplegic — until they can’t move anything.”
His mom is reminded that muscles are needed for smiling.
“They lose their smile muscles — and Conner has the best smile in the entire world,” she said.
Conner doesn’t know the specifics of his disease — but he knows he’s different.
“If you spent the day with him compared to other kids, you’d see he tries to run and he can’t keep up, he can’t climb things,” said Christopher.
“He’s asking a lot more questions these days,” said Jessica.
Conner’s siblings — his twin brother, Kyle, and his younger brother, William — also know their brother is special.
“It’s almost like when you have a small baby — you grow into it,” said Jessica. “Everybody sort of learning and knowing what’s going on, without even really wondering.”
The Currans said they know how to address the questions.
Kyle came home one day after school this year and told his parents that other boys and girls on the playground wanted to know what was wrong with Conner, specifically why he stands around watching other kids play.
“Conner was hiding his face,” explained Jessica.
“Did you hear the boys and girls say that?” she asked Conner. “He said it didn’t hurt so bad this time...
“I validate his feelings, I want him to feel it, I said ‘Conner that stinks that you can’t keep up sometimes,’” she said.
Conner takes 26 different pills every day and a shot. He’s asked his parents which one will help him run fast.
When questions like that come up, they focus on making him think about all the things that he can do and enjoy like the swings, the tricycle, the sandbox, and playing hide-and-go-seek.
Conner goes to a few physical therapies every week — his favorite is horse therapy, which he does at an eco farm in South Salem.
“He rides the horse to strengthen the muscle that’s already there in a non-impact way,” Jessica said.
He also goes to Danbury Hospital twice a week for aqua therapy.
At home, his parents help him stretch for 20 to 40 minutes every day.
“It hurts him, the muscles are always breaking down and in its place fibrosis is put,” said Jessica.
“It can be painful but you stretch the muscles to keep him walking longer.”
Because of Conner’s age, he’s not a prime candidate for many trials.
Younger kids tend to respond better to treatment. At six, Conner is phased out of most gene therapy trials — for now.
“Younger boys have less fibrosis — it’ll be delivered to skeletal muscle more efficiently; it’s better to test on a younger boy,” said Jessica.
His parents are on the case.
“These gene therapy trials are coming fast and furious right now,” said his dad.
“But do you want to be the first in a trial? There’s risk to trials, especially gene therapy and gene-editing trials.”
Conner is participating in one right now that could improve his quality of life.
“At the moment, he’s participating in Edasalonexent,” said Christopher.
“Basically what they’re trying to do is create a steroid effect, without the negative effects of steroids — most Duchenne boys are on steroids.”
Steroids give kids with Duchenne the opportunity to walk for longer than they normally would.
“All the top doctors recommend steroids,” said Christopher.
“We wanted to try this drug that could have steroid-like effects without the other side effects.”
Advocacy and legislation
The Currans are also active by advocating in Washington, D.C., in their son’s interest.
Christopher said there’s a bipartisan push to allow drugs for rare diseases to go on the market without a placebo trial.
“The problem is, we’re a rare disease and it’s hard to get parents that are willing to do placebo trials,” he said, “especially when it’s a painful injection.”
Senators Richard Blumenthal and Chris Murphy both signed a Duchenne appropriation and Food and Drug Administration (FDA) letter last year — the first to urge the FDA to use flexibility when approving some of these drugs.
Senator Blumenthal shared Conner’s story at the U.S Senate in efforts to protect the affordable care act.
“Having Conner's story brought to the US Senate floor, by Senator Blumenthal, hopefully can make an impact on the health care debate going on as we speak at the Capitol in Washington D.C.,” said Christopher.
“One of the things that we request in Washington is that they fast track it,” added Jessica.
“It generally takes 14 years to approve a drug from phase one, there’s lots of red tape. We feel you should be able to try these drugs on your kids with fatal diseases — they don’t have time.”