WAYNE COUNTY, W.Va. — On Sunday, Holmyr (Holtyn) Adkins celebrated his fifth birthday, a milestone his parents once feared would never arrive. Diagnosed with TBCD, an extremely rare neurodegenerative genetic disorder, doctors originally gave him a life expectancy of three to five years.
Family’s faith and perseverance
“So not only are we celebrating big today, but we celebrate his life every day,” said his mother, Kalista Brewer. “We didn’t think he would make it this far.” The Adkins family says their faith in God and the support of their community have been essential throughout the journey.
Brewer recalled the early days when she thought Holmyr would not even reach his third birthday. “I just don’t see him making it to his third birthday,” she said, remembering the fear that haunted the family. Yet, two years later, they gathered to mark his fifth year.
Medical reality of TBCD
TBCD (tubulin folding cofactor D deficiency) is a neurodegenerative disorder that progressively damages the brain and nervous system. Fewer than a few dozen cases have been documented worldwide, leaving physicians with limited data on disease progression. Currently, there is no cure, and treatment focuses on managing symptoms and preserving quality of life.
“He’s been through more in his five years than me or anybody I know has been through,” said his father, Cody Adkins. The disease can cause children to lose previously acquired abilities, and Holmyr has already experienced both gains and setbacks.
Milestones against the odds
Despite the prognosis, Holmyr has achieved several milestones that surprised his parents. “They said he’d never roll over, but yet he did,” Cody noted, adding that each new skill gives the family confidence in what he might still accomplish.
Moments of joy, such as a brief smile or a playful smirk, are treasured. “So even just like a little smirk or something is just like everything to me,” Brewer said.
Living a full childhood
Holmyr loves being outdoors, feeling the wind in his hair, and spending time with family. He also participates in a Challenger League baseball program in Barboursville, an activity his parents once feared he would never experience.
“It’s like you won the Super Bowl every time he gets to play a game or something,” Cody exclaimed. The family assists him around the bases, allowing him to play alongside other children while respecting his physical limits.
“He’s limited to what he can do, but we don’t limit him,” Cody added, underscoring the family’s commitment to inclusion.
Hope for others
As the Adkins family celebrates this birthday, they hope Holmyr’s story raises awareness of TBCD and offers comfort to other families facing the same diagnosis. “He’s still here with us, so that’s really the biggest blessing,” Cody said. “After the five years I’ve had with him, I’d rather have a lifetime with him than one day without him.”
The community continues to rally around the Adkins family, offering prayers, support, and resources as they navigate the challenges of this rare disease.
Original reporting: WCHS Eyewitness News Charleston (local) — read the source article.
