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Making the holidays brighter for a 9-year-old with a rare disorder

Published: Jan. 1, 2021 at 6:05 PM CST
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SIOUX FALLS, S.D. (Dakota News Now) - A Sioux Falls family is reaching out this holiday season to the community, looking for help in raising funds to improve their daughter’s quality of life.

9-year-old Dezzirae Woods lives in Sioux Falls with her parents and siblings, and has a rare genetic disorder known as Giant Axonal Neuropathy, or GAN. The disorder slowly deteriorate’s Dezzirae’s ability to move and function on her own, and affects her physical condition.

Dezzirae’s mother Rachel is asking for help to begin the news year, to help improve the quality of life for her daughter as it’s been tough to watch her conditions slow down as time moves on.

“Losing the ability to walk. To, you know, even get out an interact with her peers.” Woods said.

So Woods reached out to Help Hope Live, a non-profit organization that specializes in helping family with medical costs. Unlike other crowd-funding sources, Help Hope Live works directly with healthcare systems and vendors, as Executive Director Kelly L. Green said allows campaign recipients to keep other benefits.

“We all know that health insurance covers certain essentials. But there are things that when people are facing a catastrophic condition that it just doesn’t cover, let alone the co-pays and deductibles.” Green said.

Help Hope Live verifies the medical condition of each campaign, and makes sure that funds donated go specifically to medical costs associated with that condition.

“We also protect donor dollars. As a non-profit, we make sure those dollars are spent specifically the medical related expenses.” Green said.

So far Dezzirae’s campaign has raised over $2,000 as of the beginning of the new year towards her medical expenses, as well as costs to help improve accessibility in the Woods’ home. And she event got a personalized video from her favorite musician, Ed Sheeran.

“It just turned her around. I mean, she was going through a bout of depression. It just really turned her around for a while there” Woods said.

Green said that Help Hope Live helps around 3,000 different campaigns every year raising funds for medical expenses, including Dezzirae’s. She said that even though the donations may never satisfy the need for financial help, they’ll continue working to help out people all across the country.

“I truly hope that one day we will be made obsolete. That there will be a time in our country where the medical needs for each person facing a crisis like this will have what they need without having to fund-raise. But until that time exists, we will be here to help.”

As for Dezzirae and her family, her mother Rachel said that each donation so far has given her a reminder that even when things look bleak and they feel alone, there’s a stranger out there looking to help.

“It’s helped me to realize that there are people who, like I said, love and care. It’s restored my faith in humanity, and I know it has for Dezzirae too.” Woods said.

And for Dezzirae, her mother said it’s a sign another person is cheering her on for her through her journey.

“You know, we’ll see a donation or have somebody reach out and ask how she’s doing. And it makes her feel great.”

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