Brothers face same terminal illness, parents push for cure

By Matt Porter

September 14, 2013 Updated Sep 16, 2013 at 9:23 AM EST

Town of Maine, NY (WBNG Binghamton) Kalen and Kylan Kulas look like any other normal 3 and 1-year old boys, until you realize neither will ever stand up.

The two brothers each have spinal muscular atrophy, a genetic neural illness that affects nerves and muscles on the body to the point when they can no longer function.

Linda Kulas said she never knew about SMA before her grandchildren were born.

She said she would do anything to help them now.

"These two babies mean everything to us, everything," Linda Kulas said. "And kids with SMA are in need of a cure."

Over time, the two brothers' muscles and organs, like their lungs, will stop functioning and they will die.

The most optimistic view of how long they will live without a cure or better treatment is 40 years.

Many babies born with SMA don't live beyond the age of 2, and some other forms of the disease don't take effect until much later in life.

People as old as 50 years old have been diagnosed with the disease.

Linda Kulas said she's impressed every day by the two boys.

"They might not be able to walk, but they're strong in every other way," she said.

SMA affects one in every 6,000 children born.

There's currently no cure for the disease, which is why mother Sierra Kulas organized the benefit.

"It's only physical therapy, occupational therapy and some alternative therapies," Sierra Kulas said. "There are no proven treatments or cures as of yet."

Sierra Kulas said her children are performing above average in cognitive skills.

She's learned a lot from the strength of her sons.

"Our biggest lesson is an appreciation," she said. "We certainly have a different outlook than a lot of parents and appreciate every minute of every day we do have with them."

For Kalen and Kyan, who don't look like they're facing a terminal illness, life is precious.

"They're super happy," Linda Kulas said, "Always smiling, and they're a joy to be around. We enjoy them each and every day."

SMA is the No. 1 genetic killer of children under the age of 2 years old.

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