The Oklahoma City Dodgers concluded the 2019 “Home Run For Life” series Friday, Aug. 30 as they partnered with INTEGRIS to recognize Makynlee Culbertson during the Dodgers’ game against the New Orleans Baby Cakes at Chickasaw Bricktown Ballpark.
Culbertson, who was diagnosed at just six weeks old with spinal muscular atrophy, became the first child in Oklahoma to receive a new one-time gene therapy known as Zolgensma® thanks to the help of her child neurologist Jennifer Norman, M.D., at INTEGRIS Pediatric Neurology at Baptist Medical Center.
Spinal muscular atrophy, or SMA, is a severe neuromuscular disease that leads to progressive muscle weakness and paralysis.
On July 19, at 17 months of age, Culbertson received Zolgensma® via an IV over the course of one hour. Now just six weeks later, improvements in Culbertson’s health are already evident — and continue to emerge.
“Home Run For Life” recognizes individuals in the Oklahoma City community who have overcome a significant medical event with the help of their families, physicians and health care professionals. To symbolize the end of their battle against adversity, honorees take a home run “lap” around the bases during an in-game ceremony.
“Five times a season we are proud to welcome these extraordinary Oklahomans to take the field at Chickasaw Bricktown Ballpark,” OKC Dodgers President/General Manager Michael Byrnes said. “This is the ninth straight year we have partnered with INTEGRIS to honor these amazing individuals’ perseverance and courage to overcome major health challenges.”
SMA is characterized by the loss of motor neurons, which are responsible for communicating with muscles and telling them to work properly. This loss of motor neurons, which cannot be brought back, is due to a SMN1 gene that is missing or not working properly. Without enough SMN protein, motor neuron cells eventually stop working and die leading to difficulty breathing, eating, speaking and lifting the head.
Zolgensma was recently approved for the treatment of pediatric patients younger than two years of age with SMA. The one-time intravenous infusion is designed to address the genetic root cause of SMA by providing a functional copy of the SMN gene to halt disease progression. It is intended to replace a lifetime of chronic therapy for pediatric patients with SMA.
“This treatment has truly created a paradigm shift for what was previously a uniformly devastating and fatal disease,” Norman said. “SMA is essentially the ‘Lou Gehrig’s Disease’ of childhood. With early treatment, we can now give these kids a normal life. That was essentially unthinkable even just three years ago. It has truly revolutionized the practice of neuromuscular medicine.”
Advances in Makynlee’s health have already arisen in August, which is fittingly SMA Awareness Month.
“She’s significantly louder already, where before she had a really weak cry and couldn’t really cough like you or I can. Now she can,” Shanna Culbertson, Makynlee’s mom, said. “Her grip and strength in her arms; her head control has gotten significantly better; her core strength; she can hold herself up for longer. We see little things every day. We just hope to keep gaining off of it.”
Shanna Culbertson noted that while the treatment is not a cure for SMA, it will continue to help improve her daughter’s quality of life. “She’s still going to have a lot of therapy and rehab and stuff to gain back what she’s lost, but it stops the progression of it,” she said.
The Culbertson family feels very fortunate that their primary and secondary insurance plans covered 100 percent of the therapy that comes with a hefty $2 million price tag.
“It is definitely crazy expensive,” Norman said. “But ultimately, over the course of a child’s life, the one-time cost is actually a substantial savings compared to what insurance companies and families would spend for the intensive medical needs children with this disease would otherwise require.
“In addition to overall cost savings, there is also a huge quality of life benefit to the drug, which really can’t be described with a dollar amount.”
To read Culbertson’s full story, visit the Dodgers’ “Beyond the Bricks” website at: medium.com/beyond-the-bricks.
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