OCEAN SPRINGS, Miss. (WLOX) - A Gulf Coast mother is bringing national attention to a cause near and dear to her heart: finding a cure her youngest daughter’s rare genetic disease.
Amber Olsen is a business owner and mother to three, but she dedicates a lot of time to her youngest Willow Cannan.
Willow has Multiple Sulfatase Deficiency, which leaves her without the normal enzyme activity to filter out the natural waste by-product created by each cell in the body. As the waste builds-up over time, all body systems stop functioning properly. She was diagnosed at two years old.
Recently, a producer with ABC’s Good Morning America shared Amber and Willow’s story with the network’s national audience, hoping to bring more attention to this disease.
“We’ve been hoping for national attention, so this is very exciting," said Amber.
Just a few months after Willow’s diagnosis, her mother created United MSD Foundation, a nonprofit organization that would work toward funding research to create a clinical trial to help children like Willow suffering from MSD.
Amber told GMA her biggest challenge has been driving this organization as someone “who is not a medical professional.”
“I’m not a doctor or a nurse and I never knew anything about medical stuff,” she said. "It was a huge learning curve in a very quick amount of time.”
With the help of scientists and volunteers, the United MSD Foundation has raised over $2 million within two years and is currently about $620,000 away from its goal to fund a gene therapy clinical trial for children.
“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 previously told WLOX.
Now six years old, every birthday Willow gets is something for her family to cherish.
“We don’t know how many birthdays she’s going to have left. So we try to celebrate the moments in between and certainly the birthdays,” said Amber said during Willow’s fifth birthday celebration.
Now with a national network sharing their story, hopefully Willow can be brought that much closer to a cure.
“We’ve gotten a few donations through Facebook and through our website, CureMSD.org,” she said.
Part of that money will be used for a gene therapy clinical trial at University of Texas Southwestern, said her mother. The cost of that trial is expensive, said Amber, adding that they are chipping away at it thanks to the donations.
However, Amber said there is always the chance that Willow won’t be selected for that trial since researchers will only choose six to eight children.
“We knew that from the beginning," she said. “When we first went to Europe, the doctor said, ‘You know that the work you are doing probably won’t benefit your child.’ And we always hope, hope that there’s this little bit of hope that it will help her if it moves quick enough."
The amount of support from people across South Mississippi is not lost on Willow’s mother.
“This community has given so much, so now we’re expanding out to where people can hear about it and have the opportunity to donate," said Amber.
To find out more about MSD and how you can help, go to CureMSD.org.