Syracuse, N.Y. — When Elyse Clough was asked about her sickness, about why the eight-year-old girl had to be in the hospital more often than most adults do in their entire life, she responded with every that is healthy about her.
“My stomach is doing good. My lungs are doing good,” Elyse said.
It is her brain that is not so good.
Hydrocephalus: “Water in the Brain”
Elyse suffers from hydrocephalus, a life-threatening brain condition in which the fluid in the brain doesn’t drain properly. As a result, it accumulates and the buildup creates pressure and causes the head, as a whole, to swell. In many cases, it affects motor function and memory.
There are over one million reported cases of hydrocephalus in the U.S. Most cases are found in children, although the Hydrocephalus Association believes the number of adults living with it could be more, estimating that only about 20 percent receive the right diagnosis.
Nine Brain Surgeries
As a treatment for hydrocephalus, a catheter is inserted into the brain that drains the fluid, directing it from the brain into the stomach. A valve–or shunt, as it is more commonly known–then regulates the pressure, deciding how much fluid to leave in or take out.
In her eight years, Elyse has undergone nine brain surgeries to repair her shunt. The latest was back on Sept. 18 of last year. The one before that occurred two days prior after the previous shunt failed.
“She is one of those rare cases where the shunt keeps failing,” Kim Clough, Elyse’s mom, said.
Along with hydrocephalus, Elyse also has cerebral palsy. The two diseases that often go hand-in-hand. Doctors warned Tom and Kim Clough that their daughter may not be able to walk or talk. She does have a few physical difficulties; but, for the most part, she can do both.
Talking may even be her specialty, her father, Tom, said jokingly. She’s been known to boss her nurses around a time or two.
Through local fundraising event and a GoFundMe page, the Clough family was able to raise over $50,000 for hydrocephalus research. Elyse’s doctor, Dr. Satish Krishnamurthy of the Upstate Medical Hospital, is leading the research.Lisa Clough said she was able to drop off a $35,000 check last week.
Kim Clough said she was able to drop off a $35,000 check last week.