BALTIMORE, MD — Charlie Bainbridge is a real daredevil. The Catonsville, MD, boy who is battling mitochondrial disease is the inspiration behind “Charlie B’s Daredevils,” a team of 22 walkers who will return for the fifth consecutive year to walk in MitoAction’s Energy Walk and 5K in South Boston, MA, alongside other families and patients affected by mitochondrial disease.
Charlie B’s Daredevils was formed by Jeanne Jarvi of Tully, NY, in honor of her 11-year-old grandson, Charlie Bainbridge. The team travels to Boston every September to raise awareness and money for MitoAction, an organization whose mission is to improve the quality of life for all who are affected by mitochondrial disorders through support, education, outreach, advocacy, and clinical research initiatives.
This year marks MitoAction’s 10th annual walk and will be held Sunday, Sept. 14, at DCR’s Mother’s Rest.
“MitoAction is the voice of the mitochondrial disease patient community, and we are inspired by the teams, families, sponsors, and individuals who come together each year to support this event,” said Cristy Balcells, MitoAction’s Executive Director. “For us, celebrating the 10th anniversary of the MitoAction Energy Walk & 5K signifies much more than excitement about an annual event. September 14th is a celebration of the heroes in our community, of our shared successes and frustrations, and of tremendous growth. We are proud to walk together and to raise awareness in Boston about mitochondrial disease.”
Charlie is one of those heroes. At birth, he was diagnosed with a neurological disorder that derived from extremely low muscle tone. At six months, he developed infantile spasms and his family valiantly searched for an answer. After years of tests and two muscle biopsies at age 5, it was concluded that Charlie had defects in the mitochondria. With a defect, the body is deprived of the energy needed to function properly.
Mitochondrial disease is an inherited chronic illness that can be present at birth or develop later in life. It causes debilitating physical, developmental, and mental disabilities with symptoms including poor growth; loss of muscle coordination; muscle weakness and pain; seizures; vision and/or hearing loss; gastrointestinal issues; learning disabilities; and heart, liver, or kidney failure. About 1 in 2,000 people has Mito. It’s progressive and there is no cure.
Charlie’s condition has not improved but it has remained stable with age. “The unique thing about Charlie is that his disease started out so severely from birth that there has been nowhere to go but up,” said Julie Bainbridge, Charlie’s mother.
Charlie has been in and out of the hospital three times in the last six months with various illnesses related to the disease. “Our hearts break when Charlie is having problems because we know how that is affecting Julie and her family,” Jarvi said. “I think one thing I wish people would realize is how much Mito can affect the entire family.”
Mason, Charlie’s 7-year-old brother, has learned to protect his brother if he is ever in danger. “If Charlie has a seizure, Mason will call out ‘Charlie’s having a seizure’ and he will start patting his cheek until Julie gets there,” said Jarvi.
Charlie, who enjoys swimming with the help of his family, is being treated at Nemours Children’s Hospital in Wilmington, DE and Johns Hopkins in Baltimore, MD. This daredevil will proudly lead his team in Boston come Sept. 14.
The event is presented by America’s Compounding Center and sponsored by Stealth Peptides, Courtagen Life Sciences, Inc., ThriveRx, Acton Pharmacy, and Deep River Snacks.
Proceeds from the walk/5K benefit MitoAction, a Boston-based 501(c)(3) dedicated to improving the quality of life for children, adults, and families living with mitochondrial disease through support, education, outreach, advocacy, and clinical research initiatives. Learn more at www.MitoAction.org.