Like his mom, grandma and great-grandma before him, Alex was born with a condition called osteogenesis imperfecta, otherwise known as “brittle bone disease.” For every family member before him, the condition meant a lifetime of broken bones, hospital visits, and constant worry — but that story is now changing. With the support from Shriners Children’s™, Alex is experiencing a level of freedom and quality of life that former generations had only hoped for.
A family affair
Alex’s family’s story began in 1934, when his great-grandmother June started fracturing her bones at the age of 10. June would be nearly a teenager before she received a diagnosis of osteogenesis imperfecta — and, with that, she became one of the first patients with the condition to be treated at Shriners Children’s.
June’s daughter, Wanda, was diagnosed with the same condition at Shriners Children’s shortly before she was born in 1955. Like her mother, Wanda spent a significant part of her childhood in the hospital, often watching her siblings line up outside the hospital window to wave and wish her luck between surgeries.
When Wanda’s daughter was born, Chandra spent years undergoing treatment at Shriners Children’s for osteogenesis imperfecta, like her mother and grandmother before her. Experiencing more than 200 fractures in her early years, she was unable to walk before age 22 — but no less determined to make life better for others with her condition. Chandra donated her bone marrow to be used in a study, and the results contributed to the OI protocols and treatment that are now the standard of care all over the world. Best of all, this study would go on to benefit her own son, Alex.
Care that feels like family
While her treatment journey was challenging, Chandra also cherished her experience at Shriners Children’s. “The staff was like family to me,” she said.
Shriners Children’s has been providing that same level of professional care for families across the country. Founded in 1922 — just two years before June was born — Shriners Children’s has been providing specialty care to children with a wide variety of complex conditions, such as orthopedics, burn injuries, cleft lip and palate, and others.
But Shriners Children’s doesn’t provide this care alone. All services are made possible by generous donors. Through their giving, patients are able to access specialty care as well as adaptive equipment, long-term rehab, surgeries, and more. In one year alone, Shriners Children’s performed more than 24,000 life-changing surgeries, as well as 446,000 procedures. On top of that, they delivered tens of thousands of prosthetic and orthotic devices for patients in need and welcomed an additional 62,000 patients on top of that.
Hope for a new generation
With Chandra’s bone marrow donation, along with the compassionate care he was able to receive through Shriners Children’s, Alex is now able to live a life his family only dreamt of. To treat his condition, Alex receives infusions that regulate calcium levels in his blood and slow bone breakdown.
“When Alex started walking between one and two years old, I was shocked,” Chandra said. “The fact that he was able to walk, even run, and knowing I had a part to do with that, makes my heart happy.”
Without consistent treatment, Alex’s family believes he might still be spending most of his time in the hospital, facing broken bones and countless fractures. Instead, the compassionate care he receives has given him a bright future — and has made Chandra eternally grateful.
“Shriners [Children’s] is amazing with him,” she said. “I love Shriners [Children’s] so much.”
Shriners Children’s helps children heal and thrive so they can chase their dreams. Learn more about how they’re making it possible and share this article to inspire others to join you. Shriners Children’s relies on generous donors to make a difference.
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