American Teen Shares His Experience with Hydrocephalus


Donald Gentzler

Hydrocephalus is a condition that CURE International treats at its hospitals in Uganda and Zambia.  Recently, we had the opportunity to speak with a young man from Pennsylvania named Donald Gentzler about his own experiences with the condition growing up in the United States and how it connected him to CURE International.  Here is his story:

Donald Gentzler is your typical 17-year-old American teenager. He is active in his school and church, hangs out with his friends and loves to spend his free time drawing.

But in one way he is far from typical. He has hydrocephalus, a neurological condition that is caused by excessive accumulation of cerebrospinal fluid (CSF) in the brain.

A person with hydrocephalus can exhibit a number of symptoms including severe headaches, physical impairment and memory loss.

According to his mom, Jorrie, the first warning sign her son had hydrocephalus was evident the day he was born, even if they didn’t recognize it at the time.  “When Donald was born, the doctor noted that he had a big head,” recalled Jorrie.  “We didn’t think anything of it.  We just thought he was a big baby.”

One of the most common symptoms of this condition in infants is the accelerated growth of the head in comparison to the rest of the body.

But other than this, Donald did not display any other signs of hydrocephalus over the first couple years of his life.  Many infants with hydrocephalus exhibit extreme physical symptoms such as vomiting, downward deviation of the eyes (also called “sunsetting”) and seizures.

In fact, it wasn’t until Donald started having learning difficulties and experiencing painful headaches at age 3 that his parents realized something was wrong.

A specialist identified his problem: communicating hydrocephalus, a type of hydrocephalus that allows the CSF to drain, but still puts pressure on the brain.

“We were given our treatment options for Donald. The option most often used is to have a shunt inserted,” said Jorrie.  “But we were not sure we wanted to go in that direction.”

Another option was to monitor the pressure in Donald’s brain. Since the pressure was within tolerable levels, the family elected not to go with surgery.

Growing up for Donald was challenging at times. His head size was often the subject of teasing from other kids.  But with the love and support of his parents, he never let his condition define who he was.

Now at 17, most of the outward signs of his condition are gone.

“I tell people I have hydrocephalus, and they often ask me, ‘What’s that?’” said Donald.

After realizing that so many people were not aware of his condition, Donald wanted to help educate others about the effects of hydrocephalus.

“I want to get the message out about this condition,” he said. “It affects many children not just here in the United States, but many more around the world.”

It was Donald’s talent for drawing that offered him an opportunity to do just that.

His father, Craig, says the family came into contact with CURE International. They learned that CURE is dedicated to treating children in Zambia and Uganda who have hydrocephalus.

“This is truly a wonderful institution,” said Craig.  “Its hospitals are helping so many children with hydrocephalus who would have had no access to the care needed to treat their condition. We did not have that worry with Donald.”

Donald has been able to use his talents for a couple of different communications projects with CURE.  He says he can relate to those kids in the developing world who have hydrocephalus, and he is glad he now has a chance to help them.

“I want to help give these kids hope through my drawing,” he said. “I am very thankful for everything I have, and this is a way I can tell others about how these children deserve the same chance for medical care that I had.”

Donald plans to make art his career. He is set to begin his first semester at the Art Institute of York (in York, Pa.) in the summer of 2010.  He also illustrated two books that have been written by his sister.  Go here to find out more info.