Marshall family hopeful they'll find cure for daughter's rare disease


Emma Rose Neal seems like any other 2-year-old, but her doctors believe she is the first recorded case of a rare disease in the United States.

Just months ago Emma Rose was diagnosed with Degenerative Leiomyopathy. It's a rare disease that causes intestinal obstruction and leads to malnutrition. There is no known cure.

"To see an innocent 2-year-old that was perfectly fine at one point and now every day lives to attached to IVs and IV poles, and watches other kids run around and play and wishes she could do the same," Ashley Neal said.

Neal said her daughter's illness is taking its toll on the entire family., but the Marshall toddler has shown the kind of strength many a hardened adults have spent their whole lives trying to develop.

She is hopeful her daughter can be cured, but the problem is the rarity Emma Rose's diagnosis.

Her doctors say the disease has only been recorded in parts of Africa and has only affected a small number of children in the world. Her doctors believe she is the first recorded case of the disease in the U.S.

"Is she going to live? Is there a cure for it? Is there something that we can be doing differently?" Ashley said.

The questions are something Ashley and her husband, Emma Rose's father John, ask every day.

After receiving medical attention in the area, the Neal family were referred to C.S. Mott Children's Hospital at the University of Michigan Medical Center in Ann Arbor.

The Neals said her doctors are stumped and have referred the family to a hospital in Cincinnati, Ohio.

At this point the family is just hoping someone is actively doing research on the disease. With no clear path towards a cure, the family is relying heavily on each other to make it through a very stressful ordeal.

John Neal said his family is "certainly a strong team - all of us - and I know we'll figure it out."

John has had to miss a lot of work because of hospital stays after his daughter was first diagnosed with Gastroparesis, a condition that affects the movement of the stomach muscles.

The family has set up a GoFundMe page to help raise money to pay bills as they continue seeking medical care for Emma Rose.

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