Boy battling rare disease takes first steps
From the moment Isaiah Kobernik was born, the odds were stacked against him. Isaiah was born with a rare genetic disorder, called Spinal Muscular Atrophy, or SMA. The disease affects the spinal cord and in the most serious cases, like Isaiah’s, SMA takes away the ability to move, eat and even breathe.
When Isaiah was diagnosed with SMA-1 in his first year of life, doctors told his parents about the terrifying statistics. SMA can be fatal and Isaiah had a 10 % chance of making it to his second birthday.
Despite the daunting diagnosis, Anastassia and Gerad Kobernik leaned on their faith to find hope. They continued to try and get Isaiah enrolled in clinical trials across the country, offering promise for kids battling SMA. Finally, last year, Isaiah was accepted into a trial happening at Seattle Children’s Hospital. Isaiah was one of only two children to get a spot.
In his first year and a half, Isaiah couldn’t lift his arms, move his legs, roll over and had trouble eating. Now, a little over a year into the clinical trial, Isaiah milestones are clear miracles. This week, during a physical therapy visit, Isaiah took his first steps. With the help of his therapist, Isaiah beamed as he walked for the first time, saying to his mom with joy, “Mommy, I walk.”
“Being able to see him light up and say look at me is better than any other feeling in the whole world,” says Anastassia Kobernik. “Better than anything you could imagine. That joy and sense of hope and that he’s going to be able to do these things and exceed our expectations.”
The Kobernik’s know Isaiah still has a difficult journey ahead, but they are now more hopeful than ever. Recently, Isaiah got his first wheelchair that he’s now strong enough to maneuver himself. He’s also turning pages of books using his own strength.
SMA affects about one in 10,000 babies and right now there is no cure. The Kobernik’s are optimistic the drug Nusinersen, being used right now in Isaiah’s trial will soon get FDA approval and be made available to other kids battling SMA.
Click on the link to learn more about how you can get involved in the fight to find a cure for SMA and join Isaiah’s army in their mission.