Sierra Kulas had stopped listening. The doctor continued to talk, but she couldn’t process what he was saying. She was picturing her sons’ faces… their perfect smiles… Her husband Jared squeezed her hand a little tighter and she knew this was real, no matter how much they wished it wasn’t. “The feeling of despair,” Sierra told us, “does not begin to describe how you feel when you are told that your child has a terminal illness that is immediately progressive, and you have no control. Now not just one of our children, but two.” The improbability of this situation… both her sons being diagnosed with SMA Type 2 within months of each other…it hurt her brain to think about. Everything else faded into the background, a piercing silence, and as she walked out of the doctor’s office with her husband, their lives completely changed, the doctor’s last words were still ringing in her ears-
“These two were meant to have each other.”
When Kalen, now 5, suddenly stopped being able to bear weight on his legs around one year old, a red flag went off inside his parents’ heads. They knew something was wrong, but it would be over a year until they finally got answers. After 14 months of testing, Kalen was diagnosed with SMA Type 2. Although less aggressive than Type 1, the end result is the same: horrific.
Spinal Muscular Atrophy does exactly what it promises – it slowly atrophies the motor neurons that control muscle movement. That’s why Kalen was suddenly unable to use his legs. SMA then moves on to weaken his arms, then facial muscles, ultimately compromising his ability to swallow food or breathe independently. It does not affect cognitive function whatsoever. The life expectancy is unsure, but thought to be around 10 years, and there is no cure.
As Sierra and Jared grappled with this life-shattering diagnosis, they had their younger son Kyan tested. The chances were slim that both had inherited this genetic condition, but it was possible. When they got the call to come see the doctor for the test results, their hearts sank. They already knew… both their sons had the same fatal disorder.
“It’s easy in this situation to become negative and hopeless.” So together, the Kulas decided that they would not spend their time dwelling on what they couldn’t change. Instead, they focused on the present. On spending each day cherishing the time they had with their sons. On trying to find a cure. On making experiences as accessible as possible for Kalen and Kyan. And for that last one, they needed some help.
As Sierra put it in her application to Chive Charities, “the boys deserve to be independent in their environment and their community.” We couldn’t agree more. For horseback riding, water therapy, to see wrestling matches and to play in an inclusive sports team, they needed a van that can fit their wheelchairs. To attend clinical trials that have drastically improved their symptoms, 4 hours away in upstate New York, they needed a way to be safely transported. Kalen and Kyan have big dreams, and their dreams didn’t change when they got their diagnosis. And Chive Charities is in the business of dreaming big. With a $55,000 grant from Chive Fund donors, they got the ADA van that will change their lives.