Wiggin’ Out for Willow aims to fund first-ever clinical trial

A grass roots effort by her family and friends, to fund a clinical trial, could be what saves Willow.

Wiggin’ Out for Willow aims to fund first-ever clinical trial

OCEAN SPRINGS, Miss. (WLOX) - A six-year-old Jackson County girl is in the fight of her life. Three years ago, Willow Cannan was diagnosed with a rare disease called Multiple Sulfatase Deficiency (MSD). One trip to the doctor’s office in 2016 changed everything in Willow’s life forever.

“In 2016, Willow was diagnosed with Multiple Sulfatase Deficiency. It’s a rare genetic condition, kind of like ALS or Alzheimer’s Disease," said Amber Olsen, Willow’s mother. “It’s a neuro-degenerative disease. So, she used to be able to run and walk. That first year she was diagnosed she lost most of her abilities, and her body’s slowly declining. It’s fatal, and most children die before they’re 10."

Posted by Cure MSD on Thursday, March 28, 2019

So Willow’s family got to work.

“We found a group of researchers and doctors that are putting together the first-ever treatment and clinical trial for her disease. Hopefully it will help Willow, but we know it will help other kids with MSD,” Olsen said.

This clinical trial includes a new type of gene therapy.

“She has one bad gene in every cell in her body, and this will put a correct gene in every cell in her body. There’s an injection that goes in through the spine, floods the body and corrects the gene," Olsen said.

Wiggin’ Out for Willow aims to fund first-ever clinical trial
Wiggin’ Out for Willow aims to fund first-ever clinical trial (Source: Photo Amber Olsen)

So the United MSD Foundation, created by Olsen, is hosting the third annual Wiggin’ Out for Willow, a fundraiser designed to help bring in the last $600,000 needed to fund the clinical trial but in a fun way.

“We wanted to do something fun. It’s a very serious subject, but to raise money we want people to have drinks and have a good time and spend money," Olsen told WLOX.

Leonie Simmons owns Lavish Salon in Biloxi and Dime Store Diva Creations. When she was approached about the fundraiser, she felt called to help.

“When I got there and met with Amber Olsen, Willow’s mom, and heard her story, it was so humbling. It almost didn’t seem like real life. It really seemed like she was telling me about a movie," Simmons said.

Wiggin’ Out for Willow aims to fund first-ever clinical trial
Wiggin’ Out for Willow aims to fund first-ever clinical trial (Source: Photo Amber Olsen)

That’s because it was at that moment that Simmons found out that Olsen and her foundation had single-handedly raised the $2.4 million of the $3 million needed to fund the clinical trial.

“Just that fact that a mother’s love for her child, and the universal love for children,that was it, I was hooked. The minute I heard about the cause and what was happening and what little research had been done, I just knew I had to be a part of it," Simmons said.

Wiggin’ Out for Willow promises to be a fun-filled night of wigs, food and entertainment, not necessarily in that order. For Simmons, the reason for the night couldn’t be more clear.

“Get a wig, or call us and we can get you a wig and... I’m just glad to be able to give back and to be a part of this event. Because like I say, it’s about saving children," Simmons said.

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