OCEAN SPRINGS, MS (WLOX) -
Two Coast moms are headed to the nation's capitol to meet with lawmakers about ways to fund research and find cures.
Eleven-year-old Levi and 3-year-old Willow are different in a lot of ways, but share a common similarity - they both have what's considered an ultra rare disease.
"She has multiple sulfatase deficiency. In our cell is a thing called a lysosome. It's main job is to take out the trash and her trash man doesn't work properly," said Amber Olsen, Willow's mom.
Over time, Willow won't be able to move on her own and eventually her central nervous system and muscles will break down. Doctors say most children with her disease don't make it past the age of 10.
"We were like, ok we'll just go find out what the treatment is and then he said there is none, so it was really hard to hear that there's nothing that can be done," Amber said.
Levi's mom Dona Krystosek says her son has Jansen's Metaphyseal Chondrodysplasia, a rare, debilitating form of dwarfism. His bones grow deformed, which requires him to undergo multiple surgeries throughout his life.
Even so, the two moms aren't giving up. Both are heading to Washington D.C. to meet with lawmakers and the National Institute of Health to discuss funding and grants to help find research and cures for the two diseases.
"These are the people up there that have the ability to help us with funding and to speed along processes for drug trials and stuff like that," said Dona.
Until a cure is found, the families continue to search for answers to give their children a normal healthy life.
"I want her to have a chance like other children should have a chance," said Amber.
Rare Disease Day is Tuesday, Feb. 28. Both the cities of Ocean Springs and Biloxi gave a special proclamation for both mothers and their children.
To learn more about Levi's disease and Willow's disease you can find them on Facebook by searching Warriors for Willow and Little Levi.
Source: http://www.wlox.com/story/34580471/two-coast-moms-fighting-to-find-cure-for-their-childs-ultra-rare-disease
