A local boy battles an incurable, debilitating brain disease

September is National Hydrocephalus Awareness Month.  Hydrocephalus is a condition that occurs when fluid builds up in the skull and causes the brain to swell.

The name literally means ‘water on the brain.’

Roughly 500 babies are born with Hydrocephalus each year and 6,000 more will develop the disease in their first two years of life.

Local 6’s Mychaela Bruner has been following Payton and his mom, Sarah Wilson-Kraft’s journey for the past three years.

"I really don’t know how to explain this a whole lot, but I’m just a lot different than other kids… I have trouble playing with other kids, it’s not that they bully me, I just have trouble interacting with other kids," said Payton.

He has Hydrocephalus – an incurable, debilitating brain disease.

"I just really want, what feels like a curse on me to just go away. I want to be like other people. I want to be normal again," said Payton.

Payton has had five brain surgeries since his diagnosis when he was only two years old.

"It was really hard to not be able to hold my baby, not be able to kiss him, not be able to leave the hospital like most mothers," said Sarah.

He had a shunt installed, which helps to drain the excess fluid from his brain.  However, last month – once again – Payton was put back in the hospital.

"They have to go in and open his scalp and remove the old shunt, they check each piece of it to see what’s working, disconnect and reconnect and check to make sure the flow is good then put him back together," said Sarah.

For Payton, every day can be a struggle.

"He can’t run, he can run short distances, gets tired quickly, his neck muscles and core are not strong because they have to compensate for holding his head because his head is large compared to other kids his age… He has a really difficult time making friends, he doesn’t have a lot of control over his emotions, that section of his brain is damaged, he gets frustrated quickly, his intellectual side is hide, but his emotional and dealing with stressors is low," said Sarah.

Payton and his mom decided to take their fight to Washington D.C. to push for a cure and ask for support.

"Our mission there was to bring Hydrocephalus awareness to the forefront to push for funding, research, whatever we can get to get some help for our babies because they deserve all the help they can get," said Sarah.

Hydrocephalus is a lifelong condition that affects more than one-million Americans from newborns to seniors.  A person diagnosed with Hydrocephalus deals with headaches, loss of coordination or balance, and changes in personality and problems with attention.

The outlook for someone battling Hydrocephalus depends on the extent of their symptoms.  Many children suffer lifelong brain damage.

You can join the fight for these Hydro Heroes.  You can help raise awareness by just spreading the word about Hydrocephalus.  You also help by donating to the Hydrocephalus Pediatric Foundation.

To learn more about the Kentucky Pediatric Hydrocephalus Foundation, click here.

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