Run for those who can’t.
That’s the motto Hollister resident Leeandra Archdeacon lives by every minute of every day.
Run for those who can’t. In Archdeacon’s case, she runs for her 6-year-old son, Nicholas, who was diagnosed over three years ago with Duchenne Muscular Dystrophy, a fatal muscle wasting disease with no cure.
Nicholas’ doctor told Archdeacon her son—who was only 3 at the time — would lose his ability to run, and ultimately die.
“It’s terminal,” Nicholas’ doctor said to Archdeacon over the phone. “Go home and love your child.”
Archdeacon’s response? It was good knowing you. She immediately went in search of another doctor, but not before going into a deep month-long depression. In that time, Archdeacon spent most of her day curled up in bed, paralyzed with fear, feeling sorry for herself and unable to cope with the fact that her world had just been turned upside down.
“I didn’t know what to do, but I decided one day I just couldn’t stay in bed,” she said.
Upon doing research for Duchenne’s, Archdeacon came upon a link for Run For Our Sons, a group of parents, families and friends who run to help find a cure for Duchenne’s.
Shortly thereafter, Archdeacon signed up for her first race of any sort — this one just happened to be a half-marathon around and through Disneyland in September 2010. It’s not like Archdeacon likes running.
Heck, she loathes it. Hates it, even. But running is the one thing that has helped her most ease the pain she endures on a daily basis. Ever since that dark, horrific day on June 23, 2010 — the day Nicholas was diagnosed with Duchenne’s — Archdeacon needed to find an outlet.
Running is what kept her going. For the last three years, running has been Archdeacon’s psychologist, an activity she could engage in to get away from life’s daily grinds.
Now, more than ever, running is her oasis, and it’s given her the energy to rise and find a cause worth fighting for. Archdeacon has found a greater purpose in Run For Our Sons, and she hasn’t stopped running since. From Jan. 9-12, Archdeacon is scheduled to run in the inaugural Disney World’s Marathon Weekend Dopey Challenge, where participants run a 5k, 10k, half-marathon and marathon over four days.
One week later, Archdeacon will run another half-marathon at Disneyland’s Tinkerbell event.
“Even though I hate running, the reality is more people learn about Duchenne’s when you’re on the course at these large running events,” she said. “We build more awareness than at any other time of the year, and you can’t put a price on that.”
Indeed, while the diagnosis for patients with Duchenne’s is grim — the average life expectancy is 25 but Nicholas is not expected to live past the age of 20 — Archdeacon is optimistic that within the next several years a cure will be found.
Nicholas, who was also diagnosed with autism spectrum disorder a year ago, has already started to suffer from some of the debilitating effects of Duchenne’s. He has to walk on his toes because the muscles in his calves have turned into scar tissue. He’s also lost most of his strength in his hands, and simple, everyday tasks most people take for granted — handwriting, for instance — have become ultra difficult.
“But he is very strong compared to kids his age,” Archdeacon said.
Nicholas is one of 18 kids ranging in age from 4 to 15 who participate in the Hollister Little League Challenger Division, which allows special-needs kids to play a baseball game every Saturday during its fall season, from August through October.
“We’ve got kids with cerebral palsy, autism, different types of muscular dystrophy, and Fragile X Syndrome,” said Archdeacon, who is the vice president of the league.
In their season-finale last Saturday at Veterans Memorial Little League Field, the Challenger Division kids got to live out a dream when they played with members of the Hollister Fire Department.
“The kids are in awe of the firemen because they are their heroes,” Archdeacon said. “The Challenger Division is great because it gives the kids a sense of belonging, and shows them that even though they face great physical challenges, they are all active and equal to everyone else. I know parents of other special-needs kids have seen smiles on their kids’ faces every time they play a game. To me, that’s priceless.”
When Archdeacon sees her son dealing with pain, she knows she has to be strong for her entire family.
“When I see Nicholas struggling, it gives me that much more drive to stop this disease,” she said. “I know I need to run more and keep pushing forward because that’s the only way things are accomplished in this world. Nothing changes when a parent stays in the house and watches time go by. I’m running for a cure, running for my son, and at the very least I can squeeze every last ounce of energy I have in my body to help him live as long as he can.”
And so she will.
