Little girl with fatal disorder needs help
A three-year-old girl from Ocean Springs has been fighting a rare and potentially fatal genetic disorder and doctors say her body could shut down before her tenth birthday. Since her diagnosis, Willow’s family has been on a mission to save her life and now they’re rallying the community to help with the fight for her life.
Life has been a constant battle for three-year-old Willow Olsen of Ocean Springs. Diagnosed with a fatal rare genetic disorder at just 18 months, the prognosis has not looked good with doctors telling Willow’s mother, Amber Olsen, there is no cure for the little girl’s disease. “They did genetic testing and basically it came back that she has a genetic condition and it’s called multiple sulfatase deficiency. Basically you take her home and she slowly dies.”
Soon after learning how to walk, the disorder crippled Willow, robbing her of that ability. These days, she can barely use her walker and can no longer stand on her own. This has not deterred Amber from fighting to help her daughter survive.
Learning there is less than 100 kids in the world with Willow’s condition, Amber has traveled across the globe in search of doctors who have researched the disorder. Recently, Amber believes she has found the hope they have been looking for. “They absolutely can solve it. He said they know what the gene is. They know how to fix it. They just don’t have the money.”
Amber and her husband have created the United MSD Foundation to help raise money to fund the work needed to develop a clinical trial to help find a cure for MSD. They also have a GoFundMe account and Facebook page where the community can donate. “This all goes 100 percent towards the cause to help these children.”
Amber says even if a cure isn’t found in time for her little warrior, Willow’s life will play a role in getting one step closer towards a cure for this disease. “I feel like we’re turning it into something where she’s going to leave a legacy and people’s lives are going to be saved because of her.”