Fundraiser for 9-year-old living with rare disease

HealthBeat

SIOUX FALLS, S.D. (KELO) — Living with a rare disease can get expensive for some, and a local family knows that all too well.

Dezzirae Woods has been through a lot in her nine years of life. Soon after entering the world she had open-heart surgery and later began experiencing unexplained seizures– with doctors later diagnosing her with Giant Axonal Neuropathy or GAN.

“It can affect her mobility, her respiratory function, you know, name it. It also affects her bowel function where she had to have, aside from the open-heart surgery, a procedure, she put in an ACE to help her avoid her bowels,” Rachel said.

Her mom Rachel says the extremely rare and life-threatening neurodegenerative disease has left Dezzirae with a life expectancy of teens to early 20’s.

“I mean, this is such a cruel disease that it takes away my child’s livelihood and it just… I’m sorry,” Rachel said.

Dezzirae’s diagnosis has been emotional, but her positive attitude towards it has left not just her mom in awe, by well known singer Ed Sheeran.

“Hey Dezzirae, Ed here, I heard you’re a fan,” Ed Sheeran said.

Rachel says they’ve been blessed with an outpouring of support from the community, but the financial costs continue adding up– which is why they’ve partnered with Help Hope Live, a nonprofit fundraising network.

“Nobody likes to ask for help and especially in a time of need. And it’s really hard. How do you ask for help? But the one thing that we have learned over the 37 years is that people really do want to help. They just need to be asked,” Kelly Green said.

Executive director of Help Hope Live, Kelly Green says all medical conditions are verified and every donation is protected through Help Hope Live.

And one way people in KELOLAND can help is by going out for a meal at Dezzirae’s favorite restaurant.

“Overtime Sports Grill and Bar up here on 26th, has a month long fundraiser going where anyone who goes in and makes the purchase in Dezzirae’s name, the funds will be automatically put into an account for her,” Rachel said.

The fundraiser runs through the month of August, with hopes of raising money towards household changes including a walk-in shower to make life for Dezzirae a little easier.

“We’re hoping maybe just, maybe we can raise enough to get a wheelchair accessible van as well. To get her to and from appointments in and out of state. Especially now that ours has been out of commission actually since the 4th of July,” Rachel said.

So, if your budget allows for a meal out of the house– consider one that comes with a big return.

If you’re interested in making a donation for Dezzirae but can’t make it out to eat, click here.

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