I spent time with 6th year old Elyse Clough and her family to see how hydrocephalus impacts their family. Elyse has had 6 brain surgeries since birth, tonight you hear Elyse’s story.

“She was only 24 weeks along when she was born. She weighted a pound and seven ounces. Two weeks after she was born we found out that she had a massive brain bleed and so she essentially had a stroke. And as a result of that, that was how she developed hydrocephalus,” said mom Kim Clough.

Having an incurable brain condition isn’t stopping Elyse from having the time of her life. She enjoys playing games with her big brother and has big plans for the future.

“And this is lamby, yea, a doctor,” Elyse Clough said.

Sometimes though Elyse can’t have fun like every other little kid. Sometimes her shunt, that keeps her alive, shuts down and overflows with fluid…sending Elsye to the hospital for emergency surgery and leaving the family at a standstill.

“Quiet, boring, lonely,” Nathan Clough said.

“She knows that when she has a seizure that she needs to go to the hospital. She knows that when she’s in the hospital she’s going to need surgery and have an incision and she knows after surgery she won’t be able to go to school or see her friends or her cousins for a long time until she heals,” Tom Clough said.

Seeing what Elyse goes through on a daily basis, mom Kim and dad Tom along with other families and supporters created the reach organization. Research, educate and cure hydrocephalus. This gained national attention from the pediatric hydrocephalus foundation to send Elyse to Capitol Hill on August 19th for National Hydrocephalus Awareness Day.

“Are you excited for DC? Yea. What are you going to do down there? You’re the spokesperson for hydrocephalus. Oh, yeah,” said Elyse and brother Nathan.

Elyse was a little camera shy, but her family is very excited for the trip that Elyse is the spokesperson for and to one day find a cure. But, until then they hope to gain support in Washington to create a spinal fluid bank database. For more information head on Elyse and the condition head to www.hydrocephaluskids.org.