KINGSPORT, TN — The Castle family’s goals are simple: raise awareness about mitochondrial disease, move forward, and live.
They count their blessings and thank God for all that they have, especially Cooper. “Cooper is here because of the hand of the Lord,” Chris Castle said about his 6-year-old son.
Cooper coded when he was 12 hours old, starting this Fall Branch, TN, family’s mitochondrial disease odyssey.
A large part of that journey includes raising awareness. This year marks the third annual Cooper’s Race, A MitoAction Energy Walk & 5K Race. The event will be held on Sunday, Sept. 28 from noon to 5 p.m. at Warriors’ Path State Park in Kingsport, TN.
“Since we started this event almost three years ago, we know of at least 40 families who have been diagnosed with mitochondrial disease in the area,” said Chris, a nurse practitioner and pastor. Before the event, the family didn’t know anyone else dealing with Mito. “We thought we were alone,” said Cooper’s mom, Melissa Castle.
Cooper was officially diagnosed with Mito when he was 21/2 years old, Melissa said. He has mitochondrial myopathy, with Complex 1, 2, 3, 4, and 5. Cooper recently underwent more testing with Dr. Fran Kendall, and Melissa and Chris also submitted labs, so hopefully the family will know more by February.
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.
The little fighter was in and out of hospitals early in his life, crashing and then rebounding. Chris and Melissa found themselves advocating for Cooper right from the start. They could tell when he was getting ready to crash. Eventually the doctors saw what the Castles saw and one neurologist thought it had to be metabolic. An appointment with Dr. John Shoffner in Atlanta confirmed it.
Happily, Cooper hasn’t been in the hospital for long stretches since he was 4 years old. Melissa, a teacher, homeschools Cooper and his older brother, Jackson, 9, minimizing exposure to germs. Cooper is able to walk but has a walker or stroller for long distances. He suffers from heat intolerance and has a specialized diet. In Cooper’s case, Mito is an invisible disease. “If you see him, he doesn’t look sick,” said Melissa.
Cognitively, Cooper is a real character, Melissa said. He loves food – and knows what he can and can’t eat. He’s imaginative. He loves wrestling with his brother, video games, and relaxing. He even plays baseball, sometimes with the help of his stroller.
He also loves being the star of Cooper’s walk! “The biggest thing is bringing everyone out and raising awareness,” said Chris. “We are educating, educating, educating.”
The Cooper event annually draws about 300 people. The family — which is supported by extended family, a close-knit and longtime group of friends, the church community, and more — solicits sponsors, organizes games and activities, and promotes the event.
Family member Tina Castle was the catalyst behind the event, having researched mitochondrial disease and finding MitoAction.
The Castles are grateful for the partnership with MitoAction, whose mission is improving the quality of life for children, adults, and families living with mitochondrial disease through support, education, outreach, advocacy, and clinical research initiatives. Proceeds from Cooper’s event go directly to MitoAction to help families living with Mito.
“The Castle family’s efforts to raise awareness and help others with mitochondrial disease is so needed in this region,” said Cristy Balcells, Executive Director of MitoAction. “Not only is Cooper’s Race a great family event, it is an educational tool that is making a real impact on the community’s understanding of this disease.”
According to Chris, “As a result of the Lord touching Cooper, blessing us with the gift of gab, the privilege of meeting MitoAction, and the opportunity to share with other families … I think we’re doing a good job of communicating to doctors and telling the community it’s a real disease.
“If we can help one person, it’s worth all the labor,” Chris said.