MERIDIAN, Idaho — When Killian McCarty was born thirteen years ago, his parents were elated. He was their first child, and all signs pointed to a healthy, happy baby boy.
"When Killian was born, it was a typical pregnancy, everything was great and happy," said Tara McCarty, Killian's mom. "But, as time went on, we started noticing some missed milestones."
Killian was diagnosed with cerebral palsy at the age of two, and for years, that's what his mom and dad thought he had.
However, years later, when he continued to regress and his condition worsened, they found out their son was misdiagnosed. It turns out, Killian never had CP.
"The doctor said 'it just doesn't make sense. You have a perfect birth story, you have no events in childhood, you have an abnormal MRI and regression of symptoms, I don't think you are looking at cerebral palsy,'" Tara McCarty said. "Killian is 10 at this time, and I'm thinking what have we been doing for the last 8 years?"
The McCarty's were given a new diagnosis. It was not the news they wanted to hear.
"We discovered it's one of the most rare leukodystrophies, there's only about 200 kids with this in the world," Tara McCarty said.
According to NORD, the National Organization for Rare Disorders, Leukodystrophies are a group of rare, progressive, metabolic, and genetic diseases that affect the brain, spinal cord, and often the peripheral nerves.
Killian has Tubb4a leukodystrophy, one of about 50 types of leukodystrophies that cause a loss of myelin, the white fatty insulation that coats the nerves in the brain and spinal cord, which allow messages to be sent from the brain to the muscles. It can also cause atrophy of the basal ganglia and/or cerebellum, leading to movement impairments and difficulty talking and swallowing. It is a progressive disease, so sadly kids afflicted will continue to lose function as they get older.
"Leukodystrophy is a degenerative condition, and this is where I get emotional," said Tara McCarty holding back tears. "Things are going to continue to decline, and it is so rare there is no treatment or cure for it. You basically take things as they come. You have to come to terms with that grief."
Killian is working hard to combat the effects of this rare disease. He now uses a wheelchair full-time.
"He does five therapies a week, and we are typically downtown at St Luke's two or three times a month to see a specialist. He's had surgeries, x-rays. He now has a feeding tube, because swallowing is so difficult, and he was losing a lot of weight. Fine motor skills are becoming really hard for him," Tara McCarty said. "It's just hard, it's hard as a parent, and it's hard for him to understand that things may not get better. Hopefully, we can maintain where he is today.
Through all of the therapies and a recent debilitating surgery for scoliosis, Tara says Killian is the one that keeps everyone around him positive.
"He's just this pretty cool kid, he's cracking jokes with the doctors, he has the nurses laughing," Tara said. "Certainly, we have our days where we want to throw in the towel, and pull covers over our head, but it's not an option. It never is."
Despite all of his hurdles, Killian is one of the most active kids you'll ever meet. His mom says if there's a sport out there, he wants to try it!
"I love football, baseball, basketball, hockey... just pretty much any sport," Killian told us. "When I play sports, it's like I'm not in a wheelchair."
If Killian wants to try it, Tara finds a way to make it happen. She has had help from the Challenged Athletes Foundation (CAF) and other adaptive sports organizations. He's tried skiing, hockey, sailing, fishing, skateboarding, hiking, you name it!
"If he's got a passion for it, we need to find ways to figure out how to make it work. We don't do anything small here, we go big or go home, " said Tara.
Killian says he's so grateful for his family, he has a younger sister and brother. His dad is so proud of him, and he says his mom is his biggest fan.
"I love that they are always around me when times get tough," said Killian. "Mom pushes me around, everywhere we go."
Like so many kids, Killian started to watch a lot of YouTube during the pandemic. He loves to watch spicy food challenges! He asked his mom if they could create a hot sauce together. So, Tara went to work!
"So, we did a lot of research on how to make hot sauce at home, and we learned how to ferment vegetables and peppers to make our own hot sauce," Tara told us.
"It's called Killian's Wheely Hot Sauce, and it's wheely hot!" said Killian with a big smile.
Killian loves to help his mom with all the steps that go along with making the sauce, it's one of the many projects they work on together. The family often gives the hot sauce to friends as gifts.
Tara is dedicated to finding a treatment and a cure for leukodystrophy. She has partnered with other moms around the world to raise awareness and money for research. While there is currently no cure for this type of leukodystrophy, significant advancements in research have been made. With awareness and funding, clinical studies and FDA approval could be just a few years away. Treatment in the form of gene therapy could halt the progression and improve the quality of life for kids suffering from Tubb4a leukodystrophy now.
"They have really great research going on, but because of the rareness of this, it's hard to get the funding to get to clinical trials and get to treatment. It's there, medical researchers are so close," said Tara. "I think the big thing for us is advocacy, to find something that can help our kids. Our goal is within Killian's lifetime to come up with a treatment and a cure."
Tara says her son is her hero, and her inspiration to keep pushing forward.
He doesn't give up on anything, he's going to try. If you tell him maybe we better not, or I don't think that you can, you better look out because he's going to prove you wrong.
Killian is well aware of what's ahead of him, but he never stops chasing his dreams. He has a special message for people who are reading this right now.
"Just go do stuff! Live life to the fullest."
For more information on Killian's type of leukodystrophy, and to donate to funding research visit www.h-abc.org.
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