Tuff was diagnosed at the Children’s Hospital Colorado Genetics Department, a place that has become familiar over the years. Seeking insight and understanding, Tuff’s family reached out to a renowned genetics expert at Vanderbilt University, to discuss his unique diagnosis and explore the possibility of establishing a foundation that could further research into his condition. His family’s hope is to eventually start a foundation in Tuff’s name, helping to fund research for this rare condition.
Home for Tuff is a ranch outside Avondale, Colorado, where he’s surrounded by a devoted family, including his mom, aunt and his favorite companion—his 86-year-old great-grandpa. On the ranch, Tuff adores spending time with their cows and has his own set of tools to “help” Grandpa with projects. Fixing things is one of his favorite activities! He brought his toolset with him to Denver, ready for any job that might come up.
Tuff’s challenges were first noticed during a routine ultrasound, where his parents learned he had bilateral club feet. This marked the start of his medical journey, including four surgeries before he was 18-months-old and a diagnosis of failure to thrive, which required ongoing medical care. Since then, physical therapy has been part of his life, starting when he was just eight-months-old. A walker, which his team thought he might only need briefly, has become a steady companion in his daily life.
Recently Tuff’s family made their way to the Denver Ronald McDonald House for a three-week stay while Tuff received intensive pediatric therapies in Denver. RMHC-Denver provided them with a comforting home away from home, making the long days of physical and occupational therapy a little easier.
“We are so grateful to have a warm, supportive place to stay,” Tuff’s mom shared. “The staff’s kindness has truly made all the difference.”
During their stay, Tuff’s lively personality shone through. He made friends with other families, enjoyed music performances in the lobby (he’s particularly fond of classical tunes) and never missed an opportunity to explore with his boundless curiosity. One afternoon, Tuff and his mom took in the excitement of a Broncos game, a highlight of the trip!
Both Tuff and Rilie were grateful for the meals provided during their stay. “Tuff loved the meals at the House,” his mom shared. “He’s a ‘good eater’ and especially loves his fruits and veggies!” Back at home now, Tuff is back in school and enjoying ranch life. From yelling encouragement to the cows from atop the fence to helping with the family’s dachshund and riding in the skid loader with Grandpa, every moment is an adventure.
Tuff and his mom will be back in the Denver House for more therapy sessions. RMHC-Denver will be here every step of the way, providing the care and support he and his family needs as they work to understand his rare diagnosis and continue toward a brighter, healthier future for this remarkable little boy.
