Five years after the death of a Utah boy named Mitchell Jones, the national foundation created in his name helps families struggling with the ravages of Duchenne muscular dystrophy.
Mitchell, who was diagnosed with Duchenne at the age of 3, died of heart failure on March 2, 2013, just short of his 11th birthday. One year later, the boy’s father, Christopher Jones, established Mitchell’s Journey — a 501(c)(3) nonprofit organization that “provides tools and insights on grief, healing, and learning to live a life of significance.”
Jones, 44, is a self-described “serial entrepreneur” from Salt Lake City whose creative ad agency helps other nonprofits. His wife, Natalie, is a stay-at-home mom.
A board member of Parent Project Muscular Dystrophy (PPMD), Jones recently spoke to Muscular Dystrophy News Today following his keynote presentation at PPMD’s 2018 Annual Conference in Scottsdale, Arizona.
“I definitely want to create awareness,” he said. “There’s a million diseases out there, so nobody cares. But if you talk about a human story, they learn about Duchenne. My strategy is to give them something they can walk away with that’s going to help them.”
Jones’ goal is to help families trying to cope with grief and other forms of trauma. Mitchell’s Journey does this through a variety of workshops, information packets, and storytelling on its blog — from the recollection of a camping adventure during a scary thunderstorm to an unforgettable family trip to Oregon to witness a total eclipse of the sun.
Jones said Mitchell’s Journey has received about $140,000 in donations since its inception.
“We felt we could help a lot of families with unmet needs if we could raise money,” he said. “People fall through the cracks. They can’t get help fixing air conditioners or building wheelchair ramps or renovating bathrooms to make their homes handicapped-accessible. We’ve also paid for funerals for families who have lost their sons to Duchenne.”
Collaboration with PPMD
Jones also received strong logistical and emotional support from PPMD’s founder and president, Pat Furlong, who lost her two sons, Chris and Patrick, to Duchenne.
“This father speaks to his family through the camera,” Furlong, writing on her blog, said of Jones. “Where I savor the moment and rarely take photos, he sees life and every tender moment through the lens of his camera. I like to paint tender moments on the inside of my heart. He wants a visual and wants to share his photos with anyone willing to watch.”
She added: “Maybe Chris’s approach has frightened some of the families. On the other hand, it has generated awareness and a platform to change therapeutic nihilism, ensure early intervention and, with luck, encourage appropriate use of devices and explore heart transplants for Duchenne.”
To that end, Furlong said, PPMD and Mitchell’s Journey are working together to support a range of cardiac initiatives. Both groups will continue to fund research that will further explore treatments, increase understanding on device interventions, and advance research into managing and preventing cardiomyopathy in Duchenne patients.
“Our mission is all about helping people get through situations,” Jones said. “When my son was dying, Pat reached out and said she wanted to help. She galvanized the whole medical community to try to save our son’s life. That’s how I got in touch with PPMD. She’s taken the broken glass in her own life and made a mosaic of helping other people.”
Like Furlong, Jones said he understands the loneliness felt by parents who have lost children to Duchenne.
“Nothing is more isolating than the naïve optimism of people who just don’t know better,” he said. “The further you go down the path, the harder it is to get any sense of certainty. When we found out our boy had heart failure, it was a very rapid decline. But we had tremendous happiness throughout our journey. There were some pretty profound moments of joy.”
‘The Pursuit of Happiness’
“My son Mitchell was my best friend and my little soulmate,” Jones said. “He always tagged along with me wherever I went. At the age of 10, he had heart failure. The doctors tried for about a year to stem the deterioration, but eventually I had to say goodbye to him.”
Following the boy’s death, his dad poured his energy into Mitchell’s Journey.
The organization’s Facebook page now has more than 290,000 followers; some posts have had 40 million impressions. Jones has also appeared as a guest speaker at conferences of doctors, hospitals, and even funeral home directors.
“I talk about what our world looks like when we leave those people. They want to connect,” he said. “Hospitals are interested, too. Doctors and nurses are reminded why they’re here.”
This year’s upcoming events include the 2018 Miles for Mitchell charity run, set for Sept. 8; the foundation’s Gift of Giving annual charity drive, scheduled for Nov. 1 to Dec. 19; and the Annual Mitchell’s Journey Movie Night, to take place Dec. 15, with locations to be determined.
After his 40-minute keynote speech, “The Pursuit of Happiness,” at PPMD’s conference, Jones received a standing ovation. In it, he urges Duchenne moms and dads to focus on gratitude, which in turn brings joy — and to resist the urge to compare themselves with parents of healthy boys.
“Happiness is not a destination; it’s a way of traveling, despite a million and one setbacks. There are things we can do to create moments that matter,” he said. “Forget about collecting things; those things get in the way of joy. Take as many pictures as you can of the ordinary moments, and you’ll be grateful for them in the future.”