Midlands mom fighting battle to help cure her child's disease - wistv.com - Columbia, South Carolina |

Midlands mom fighting battle to help cure her child's disease

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ELGIN, SC (WIS) -

After watching her daughter battle a life-threatening disease for 6 years, Midlands mother Jessica Caulder is fighting back through a fundraiser for hydrocephalus research.

It's a disease that causes fluid buildup, and is sometimes known as "water on the brain." There's no cure and Caulder wants to change that.

"It was the most gut-wrenching, scary thing I've had to deal with in my whole life," said Jessica.

Jessica remembers hearing the diagnosis when Emma was a little more than a year old.

The disease occurs when the body can't regulate the amount of cerebrospinal fluid in the brain. If pressure is too high, or too low, symptoms appear.

"She'll be vomiting for a week, she gets lethargic, she gets migraines," said Jessica.

That's how the Caulders know it's time for Emma to get her shunt checked. It's a plastic tube that runs from her head to her stomach that helps her brain maintain the right pressure, while staving off more serious problems like blindness. It was a cutting-edge treatment in 1950.

"There has been no improvement since then," said Jessica.

So Jessica joined up with the Hydrocephalus Association to host a run this Saturday at Colonial Life Arena. She wants to raise $20,000 to research a disease that currently has no cure, but affects hundreds of thousands.

Caulder also hopes to meet more people who are dealing with the disease. She says there are no local hydrocephalus support groups to help those who've just been diagnosed.

The disease is the most common reason for brain surgery among children, but can also hit people who've had traumatic brain injuries.

"It's one of those things where at any moment, something could go wrong and I could lose my child," said Jessica.

Emma will need to monitor her hydrocephalus for the rest of her life, or at least until a cure is found that will make her feel as normal as she appears.

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