The fight to save Willow: Raising money for the United MSD Foundation

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One mother has traveled the world in search for a cure for her terminally ill daughter.

A mother’s love has no limit. Ocean Springs resident Amber Olsen traveled around the world to see different doctors in an attempt to save her daughter Willow’s life. “She was diagnosed with this rare condition called multiple sulfatase deficiency and the doctors told us it was a terrible condition that her body is slowly going to break down over time. Most children with this don’t live to ten-years-old.”

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Willow was diagnosed with this deadly disease when she was two-years-old. She is now five-years-old. “It was the worst possible news. It’s a horrible condition where she slowly dies right before our eyes,” said Olsen.

There are less than 100 known cases of MSD globally so there has not been a treatment developed, but Amber wasn’t going to let that hold her back.  “So, we started looking online and we worked with other parents. Now, we are bringing forward the first ever clinical trial for her disease hopefully by the end of the year.”

The only thing standing between the children and this life saving treatment is the funds needed to bring it to clinical trial. Right now, they are $800,000 away from their goal. “This community has been wonderful and that is how we got our original start. We raised the funds here to do the initial research and we were very fortunate to get a $1.6 million angel donor so now we are doing the last part to fund the clinical trial itself. So, we are almost there. We are almost done. We just really need continued support with the upcoming fundraiser we have.”



If you would like to help, there will be a 5k and one mile run on February 9th in Ocean Springs to raise money for the United MSD Foundation. “There are different ways that you can volunteer with our organization. You can donate directly to our organization, we have a website curemsd.org. We have some fundraisers coming up here you can see on there.”