NAMPA, Idaho — In August of 2021, we brought you the story of Ryder Comer. Weeks after his birth, the Nampa baby was diagnosed with SMA Type 1, or spinal muscular atrophy. It's a rare progressive disease that impacts the muscles.
Babies with this type of SMA lose muscle function, and sadly, may not live past age two. But, Ryder was able to get a $2.1 million treatment, a life-saving single new infusion, paving the way for other babies in Idaho.
Ryder Comer isn't a baby anymore. He's now a toddler, and he is thriving.
"Just to catch you all up, he's known as the two-point-one million dollar baby, he received a medical treatment when he was just six weeks old. He was born with a rare genetic neuromuscular disease called spinal muscular atrophy," said Ryder's mom, Haley Comer. It was previously a fatal genetic disease for babies, and this new treatment is changing the course of spinal muscular atrophy. It's also the most expensive drug in the world, it comes at a cost of 2.1 million dollars for one infusion, just once for his entire lifetime."
Haley says that infusion saved Ryder's life. Ever since, he has been making major progress!
"We're pretty excited to share that he is doing incredible things that were previously impossible for SMA, like holding his head up, we can't really believe that he is able to do these things," said Comer. "He continues to get stronger every single week, he's got great core strength now, he's trying to sit and he can lift his legs off the ground when he's laying down. He's making sounds and talking."
There's even more exciting news for Ryder, another new treatment.
"We were able to enroll Ryder in a clinical research study and actually start another treatment for his SMA, so we spent the entire summer traveling down to Salt Lake to get the process started and receive the treatment that he's getting," said Comer. "The 2.1 million dollar infusion absolutely saved his life and provided him the opportunity to get stronger, and we are seeing that since starting this other treatment it's just filling in the gaps. We don't really have words to describe how incredible it is to watch your kid do things that we were told were impossible. He's defying the odds and proving literally everybody wrong. It's pretty awesome, pretty exciting."
Determined families like Ryder's have been pushing for SMA to be added to the Idaho newborn screening. That happened this year, thanks to a local mom who sadly lost her daughter to SMA.
"That means every baby born in the state of Idaho is now tested for SMA. With this disease, it's so rapidly progressive that early detection and early treatment matters," said Comer. "The life expectancy was two years, and he'll be two in January. He is thriving and strong. He's so happy and he's so funny, and we just have so much hope for his future. "That's one thing that this experience has taught us, to live each day one at a time and to be so thankful for what's right in front of you."
Ryder is making big strides for future babies with SMA in Idaho. He is proof, they now have a fighting chance.
"He's a hero to everybody. We just can't wait to see what he's going to do."
For more information on SMA, click here.
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