Tyler’s story: Moving toward a new future with Spinraza

Tyler, who has SMA, rides a ski lift on a recent ski trip. Tyler Hansen was always a happy child, but also a little clumsy. At first, his parents didn’t think too much about it.

“Tyler’s the youngest of four,” explains his dad, Doug. “The oldest two are tall and sprouted early, so they were both kind of awkward and clumsy. We assumed it was the same with Tyler, that he was just going through a growth spurt.”

But after a while, they started to become concerned. Something seemed different about Tyler’s clumsiness, and Doug noticed he had an awkward way of running. They took him to their pediatrician and voiced their concerns.

“The doctor couldn’t really find anything wrong, so we bounced around between physical therapy and an orthopedist,” says Doug. The physical therapist discovered Tyler’s hamstrings were very tight, so they thought that might be the problem. But when his condition didn’t improve after she stretched them, Tyler was finally referred to Dr. Partha Ghosh, a neurologist at Boston Children’s Hospital.

More than just a growth spurt

“It was obvious to Dr. Ghosh right away that something neurological was wrong,” says Doug. ‘He initially thought Tyler might have muscular dystrophy, but after some testing, we found out that he had spinal muscular atrophy (SMA).”

SMA is a rare genetic condition in which muscles throughout the body are weakened because cells in the spinal cord and brainstem do not work properly.

Tyler, who has SMA, poses at a football stadium with his dad.
Tyler and his dad at a football game

Tyler has type III SMA, the mildest form, but it was a difficult diagnosis for the Hansens to hear.

“He was 9 years old and that was it,” says Doug. “There was no treatment for SMA. We were told to expect a continual decline with some plateaus, and that he may need to use a wheelchair at some point.”

A new drug brings new hope for SMA

Then on December 23, 2016, a new hope emerged. The Food and Drug Administration (FDA) approved a promising new drug to treat SMA, called Spinraza. In clinical trials, Spinraza was shown to improve motor function in some children with SMA.

A few months later, in April of 2017, Tyler started on the drug. He was 11. So far, the results have been positive.

“The Spinraza absolutely seems to be working,” says Doug. “At his 6-month physical therapy evaluation, the physical therapist was pretty amazed. She was most impressed by his 6-minute walk test results. When they first tested him, he did 392 meters. The other day he did 450 and change. She told us that not only is that a huge jump, but it’s also not too far from ‘normal’ for a kid his age.”

Fewer falls, gaining skills

There have been some other changes as well. Tyler no longer falls at school, a fairly regular occurrence before he started Spinraza. And his gym teachers no longer have to modify activities for him.

Aside from having SMA, Tyler is like any typical 12-year-old boy — he’s into computers, basketball, video games, science and making slime. He also enjoys acting and has been in a few plays.

Tyler, who has SMA, stands at the top of a ski trail.

“The biggest change I’ve seen at home is that Tyler now comes up to the second floor more often,” says Doug. “Before Spinraza, he almost never came up because the stairs were too difficult.”

There are still no definitive answers about how Spinraza will affect the course of SMA over Tyler’s lifetime. But the Hansens and his doctors are encouraged by his progress.

“Spinraza has given us hope that we didn’t have before,” says Doug. “It’s great that we have it and it’s working.”

Learn more about the Spinal Muscular Atrophy Program.