Church helps family dealing with severe special needs

AURORA – Sometimes people need help even when they don't ask for it. That's the case for the family of 12-year-old Kayelynn Nieto, a girl with rare nervous system disorders.

"It affected me so much, that I really felt that I had to do something," Jim Laird, volunteer at Holy Love Lutheran Church in Aurora, said.

Laird saw the story of Kayelynn on 9News in November and put together a fundraising banquet and silent auction to help the Nieto family with their medical expenses.

"It seemed like it was them against the system," Laird said.

Kayelynn was adopted by the Nieto family when she was a baby. They did not know that she has a form of dysautonomia which is a hereditary sensory autonomic neuropathy. For Kayelynn, it means she cannot regulate her own body temperature. She is in danger of dying from heat stroke at any time. She also cannot feel pain. But, she does feel.

"It's a very emotional statement when she turns at you and looks real sad says, 'Daddy, I never feel good'," Michael Nieto, father said.

Michael and Juli Nieto spend all day and night trying to regulate her body temperature for her. They keep her in vests filled with ice packs and try to keep their home at 61 degrees at all times. In addition to the physical problems, the Nietos say Kayelynn suffers from mental health issues dating back to birth.

"Drug exposure, abuse of all kinds, fetal alcohol syndrome," Michael Nieto said. "She has a whole conglomeration of issues that she has to deal with."

When her body temperature goes up, it not only threatens the health of her internal organs, it triggers her mental issues, sometimes sending her into a violent rage.

"There are many times that we talk about how are we going to make it through another summer," Juli Nieto, said. "The resiliency is just wearing out."

Over the past few months, Kayelynn's medical problems have become even more complicated. She has been dealing with serious kidney infections and now the Nietos say her veins are breaking down. The Nietos say that is a serious problem because during the hot summer months, Kayelynn may need an IV to keep her cool.

"That part is really depressing," Michael Nieto said. "That's getting really old, not having answers."

The multiple trips to the hospital and the attempts to keep their home cool, especially in the summer are taking a financial toll.

"The expenses are astronomical," Michael and Juli Nieto said together. "They're large."

That's why Laird put together this fundraiser.

"Sometimes you need somebody else to either cry with you, or try to figure out some way to help you out," Laird said. "That's what we're trying to do. We'll cry with her. We really will."

aird says close to $5,000 was raised at the dinner and silent auction. But, he says the church will accept donations afterwards. If you want to help, you can send a check to the Holy Love Lutheran Church at 4210 S. Chambers Way, Aurora, CO 80013. Laird says people can indicate "For the Nieto family" in the memo box.

"I'm hoping that our efforts, we can enlist other faith-based groups or other organizations to also take up their cause," Laird said.

The Nietos say they never expected this kind of support.

"I think it's going to be pretty overwhelming and I'm just very grateful," Juli Nieto, said.

(KUSA-TV © 2014 Multimedia Holdings Corporation)


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