PHOENIX – You might only think about the MDA once a year, when the annual Labor Day Telethon rolls around. But for many Arizona families, it’s an integral part of their daily lives.
The Beckhams are one of those families. Chris and Tricia’s sons, Christo, 11, and Blake, 9, both have Duchenne muscular dystrophy (DMD), one of nine types of MD.
When the boys were diagnosed, Christo first and then Blake, the Beckhams were stunned and heartbroken.
“As a parent, when you hear that, you can’t describe it,” Chris said, fighting back tears. “It’s gut-wrenching.”
DMD is inherited from a child’s mother and affects mostly boys. While women can be carriers, they rarely exhibit symptoms of the debilitating disease.
Duchenne is caused by a missing protein that keeps muscle cells intact. Without that protein, dystrophin, muscle tissue breaks down and wastes away.
The disease usually manifests and is diagnosed in children between 2 and 6 years old. As it progresses, DMD affects all of the voluntary muscles. Kids eventually lose the ability to walk and do basic things for themselves. The disease then moves to involuntary muscles, including the heart and breathing muscles.
The prognosis is not good. Children with DMD rarely live pas their early 30s.
Knowing this, the Beckhams are packing an entire lifetime of experiences into a few short years. The family as a whole is fighting the boys’ DMD with everything they have.
Three years ago, when Christo was 8, a doctor told the Beckhams he needed to start using a wheelchair. Christo refused.
“He’s still walking,” Tricia said. “He walks longer, he lives longer. It’s that simple of an equation.
“I think that’s what’s so amazing about both Christo and Black,” she continued. “They both just fight through the pain. And they’re not complaining.”
The boys and their parents are determined to enjoy life to the fullest. They’re always ready for the next challenge, the next adventure.
“We live every day like this may be our last,” Tricia said. “It’s not. But we don’t know when the end is going to come so we’re trying to pack in 50 or 60 years with our kids in 20 because we’ just don’t know what’s going to happen.”
“We’re going to squeeze every ounce of life and every second of time,” Chris said. “You don’t look to how you’re going to die. You look to how you’re going to live.”
Chris and Tricia believe both of their sons do that very well and inspire others to follow suit.
The MDA is a big part of the Beckhams’ lives, helping them live it to the fullest and searching for a cure for Christo, Blake and so many other boys with DMD. It's your donations that make that possible, that give the Beckhams and families like them hope. And hope is what life is about.
This year’s telethon features a new format. Rather than a 21-hour marathon over two days, it’s a jam-packed seven hours on Sunday, Sept. 4. It starts at 5:30 p.m. on 3TV, and runs all the way through 12:30 a.m. (The national telethon is 6 p.m.-midnight.)