LITTLE ROCK, Ark. — An Arkansas baby with a rare genetic condition is defying all odds thanks to his doctors, the world's most expensive drug, and a move to Arkansas that saved his life.
Ollie Hurst is a seemingly happy and healthy 9-month-old.
"He is just so calming. He's strong," Elaine Hurst, Ollie's mom, said.
While sitting on a couch at UAMS with his mom, dad, and big brother, Ollie giggled and squirmed as most babies would.
"I'll see him on the floor scootching around and think 'that shouldn't be possible,' and it still just kind of blows my mind sometimes," Elaine said.
That's because Ollie has Spinal Muscular Atrophy (SMA), a debilitating genetic disorder that affects about one in 10,000 babies. As their muscles break down, children with SMA often have trouble moving, eating, and even breathing.
"By around six months of age you would expect all of these severe problems start to occur," Dr. Kapil Arya said.
Arya, an associate professor of pediatrics at UAMS and neurologist at Arkansas Children's Hospital, has treated dozens of patients with SMA — including Ollie.
"Our best bet of treating these particular children is to catch this particular disease very, very early even before the onset of symptoms," Arya said.
In 2020, Arkansas became the 14th state to require an SMA test for all newborns. Ollie's case was the first detected at birth under the new screening program.
"Just last year, in March, we decided to move out to Arkansas to be closer to family," Darrell Hurst, Ollie's dad, said.
The Hurst family came from California in the early stages of Elaine's pregnancy. California was among the states at the time without newborn screening for SMA.
"If we had been in California they wouldn't have caught it until he was already regressed," Elaine said.
Ollie received Zolgensma — a gene therapy medication approved to treat SMA — when he was 27 days old.
"That one is a one-time infusion and theoretically you're done for the rest of your life," Elaine said.
At $2 million dollars per dose, Zolgensma is reportedly the world's most expensive drug. Ollie's treatment was covered by insurance
"To be honest, even if insurance didn't cover it, I would've figured out whatever I could to be able to do it," Darrell said. "It wouldn't have mattered at that point. Being broke completely — it didn't matter to me."
According to Dr. Arya, Ollie has a "good chance" of maintaining his strength, growth, and development.
"I mean, for me — glory to God," Elaine said. "But also man, science is so cool. Without our doctors and the scientists that made this treatment, in two years from now, I wouldn't have him, and that's just unimaginable."
At the beginning of this story, Elaine used the word "strong" to describe her son. That description is music to Dr. Arya's ears.
"Strong is not something that you associate with a child who has spinal muscular atrophy," Arya said. "In fact, it is weak that is associated with this diagnosis."
With that in mind, Dr. Arya says there is only one way to describe Ollie's journey.
"I can't call it anything but a miracle," he said. "The purpose that you have when you become a physician is to heal people. To be able to be a small part in somebody's journey of getting healed, to see a miracle in the flesh — I cannot describe it in words. It's indescribable.
As time marches on, the Hurst family is thankful for every moment with their miracle.
"I'm interested to see what he's going to do with his little life," Elaine said. "I can't wait to watch him grow up and have a normal life."
According to advocacy group Cure SMA, 36 states now screen for SMA at birth. Although California did not test for the condition when the Hurst family lived there, it now has a screening program in place. Texas and Louisiana are among states that do not screen for SMA.
"I am a huge advocate of this particular newborn screening being administered by all states in the country and all countries in the world," Arya said.