CLEAR LAKE, S.D. (KELO)– A KELOLAND community is rallying around a local family after their son received a rare diagnosis.
Kayla and Kellen Bucknell and their three sons Kade, Crue and Kai live in Clear Lake. And now they’re all fighting for Crue’s health.
5-year-old Crue Bucknell has a smile that light’s up the room.
“He’s a really good kid, he’s really energetic, likes to be outside, super active, he’s a sweetheart,” said Kellen Bucknell, Crue’s dad.
Last October, Crue was diagnosed with Sanfilippo Syndrome, a condition that is like Alzheimer’s in children.
“What will happen is he will eventually lose his ability to talk, he will lose his ability to feed himself, he will suffer pain, seizures and then ultimately death before probably his first decade of life,” said Kayla Bucknell, Crue’s mom.
Since the diagnosis, the family has created several social media platforms talking about Sanfilippo and the need for a cure.
“There needs to be research and clinical studies to try to find a cure and advocacy and awareness is really important to that component,” said Kayla.
That’s where the Clear Lake community is stepping in by hosting an event this weekend, hoping to generate awareness of Sanfilippo while also supporting their neighbors.
“I hope that it just gives awareness, like a lot of people have never heard of Sanfilippo, I had never heard of it until Crue was diagnosed, so like them actually knowing what it is and also just for them to like also know that the community is supporting them,” said Jena Trupe, event organizer.
“I just hope we raise a lot of funds to help the family with anything they will need in the coming years,” said McKensey Konold, event organizer.
A community coming together to find a cure for Crue.
“The support that we have seen is extremely humbling. We are so grateful for the place we live and the people that we know,” said Kellen. “It’s not easy to have an event like that go on but you see the amount of people that you know and some that you don’t know that go out of their way to help us out and support us in whatever way they can, it’s overwhelming and we are so grateful for everything.”
The event will be taking place this Saturday from 4 to 7 p.m. at the Community Center in Clear Lake.