OLATHE, Kan. -- A year ago, we told you about a three-year-old Olathe boy who was born with a deadly disease, Spinal Muscular Atrophy. A walk/run was held in his honor to raise money for others living with SMA.
The second annual event is coming up this Saturday, April 5, and Jadon Burks will be there. He is now four, and his family is looking forward to his fifth birthday in June. They say Jadon's condition has stabilized and they're grateful for every moment with him.
Jadon's parents know a gentle touch means a lot to him even though he cannot tell them in words. He has never bee able to speak, sit up or walk. And he can no longer swallow or breath on his own. And yet...
"From a medical perspective, he's surpassing what we had ever anticipated at this point. We had been told when he was diagnosed we would be lucky to get nine months to a year with him. And to be at this point, we are so incredibly blessed and happy," said his mother, Kristin Burks.
SMA destroys the nerves that control movement. The Burks made the difficult decision more than a year ago for Jadon to have a trach to breathe. They're glad they did now.
"While the disease continues to progress and every day he beats the odds they get worse, he seems so much more stable now. Knock on wood, please," said his father, Tony Burks.
Jadon is going to a pre-kindergarten class starting this week through the end of the school year. And Saturday, he'll be at the starting line at Rolling Ridge Elementary for the Jadon's Hope Foundation Bug Run. The event will raise money for medical equipment for other children with SMA. The hope is to also put some of this year's donations toward research to find a cure.
"Just can't even put into words what that would mean if a newly-diagnosed child could get a cure and run around in their yard. That would be amazing," said Tony Burks.
Amazing. So is life with Jadon, his parents say.
"Not only does he have a great quality of life, but so do we because of what he's taught us and what he's shown us," said Kristin Burks.
He's taught them to not worry about the small things and to appreciate every day, every moment, together.
Last year, the Bug Run had 500 participants and raised $15,000. This year, they hope to raise at least $20,000. Gene therapy holds promise for children who are newly-diagnosed with SMA. The first clinical trial in humans is expected to start this year.