Ocean Springs mom starts first foundation for daughter's rare di - WLOX.com - The News for South Mississippi

Ocean Springs mom starts first foundation for daughter's rare disease

Willow is a beautiful four-year-old girl suffering from an ultra-rare disease called Multiple Sulfatase Deficiency that is rapidly breaking down her body function.(Image Source: WLOX News) Willow is a beautiful four-year-old girl suffering from an ultra-rare disease called Multiple Sulfatase Deficiency that is rapidly breaking down her body function.(Image Source: WLOX News)
Though a treatment is already being tested on mice, Olsen says the final product will most likely come too late for Willow. (Image Source: WLOX News) Though a treatment is already being tested on mice, Olsen says the final product will most likely come too late for Willow. (Image Source: WLOX News)
OCEAN SPRINGS, MS (WLOX) -

Willow is a beautiful four-year-old girl suffering from an ultra-rare disease called Multiple Sulfatase Deficiency.

The illness is rapidly breaking down her body function.

“A year ago, she could walk. She can't walk. She stopped being able to move,” said Amber Olsen who is Willow’s mom.

Willow's parents have a lot on their plate.

Caring for their older two daughters, taking care of an ailing child, and raising awareness for the United MSD foundation Amber started after Willow's diagnosis.

“It's a ton of work. I mean we are full time fundraisers. Constantly, I'm on the phone with researchers and doctors. My job is to push them to get done what they need to get done and to find the funding for it,” said Olsen.

Shortly after Willow was diagnosed, Olsen found out that there was no foundation in the United States for people suffering from MSD.

That meant there was no money being raised for research.

“There's a treatment that they have, it's done in bench work, bench research and they have to try it on a mouse, then they have to do clinical trial,” said Olsen.

So far, Olsen has been able to raise $200,000 towards research. She's also traveled to Washington D.C. to talk with lawmakers about funding research for rare diseases.

“I just feel like I have to put up a billboard and stand up for these kids and say we have to do something,” said Olsen.

Though a treatment is already being tested on mice, Olsen says the final product will most likely come too late for Willow.

“We don't have a lot of time for her. So, there's a chance that the treatment will not help her, but it will be there for the future kids that have her condition,” said Olsen.

February is rare disease month. On Feb. 24, the United MSD foundation is hosting the first ever Zebra run for rare disease.

To register, click the link below.

https://www.active.com/ocean-springs-ms/running/distance-running-races/zebra-run-2018

Copyright 2018 WLOX. All rights reserved. 

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