• Home

Community Raises Money For SMA

Posted:
How about a walk in the park!

Otsiningo Park held their first annual SMA Walk and Roll fundraiser to benefit those suffering from a neuromuscular genetic disease.

More than 100 people came out to the park showing their support.

Kalen Kulas may seem like any other 7 year old.

"I like playing with Legos. I like Transformers, I like lots of stuff," said 7-year-old Kalen Kulas.

But Kalen, along with his 3-year-old brother Kyan, has been diagnosed with SMA, or spinal muscular atrophy, a terminal neuromuscular genetic disorder.

"My older son, Kalen, developed normally his entire first year. In about 12 months, instead of walking he actually went backwards. His legs stopped being able to bear weight. And we knew at about 12 months that there was something wrong," said the boys' mother, Sierra.

However, the disease doesn't stop these boys from having fun.

"Kalen and Kyan are the happiest little boys and they really try to do everything that they can. And they really are kings of being able to adapt to things," said Sierra Kulas.

Although those suffering from SMA may have difficulties performing basic functions, it does not affect their ability to build relationships.

"The first thing we said when Kyan was diagnosed after Kalen is that they were meant to be each other's best friend," said Sierra Kulas.

And the Kulas family says Sunday's walk is an example that they won't give up on a cure.

"When the boys were first diagnosed, they said, you know, 'go home and hug them, that's all you can do.' And we're fighting against that," said Sierra Kulas.

Sunday's goal was to raise more than $5,000 towards research to cure SMA.

For more information on SMA, you can visit www.curesma.org.