Check out Oliver's Story and how Hydrocephalus has affected him.
Oliver was diagnosed with hydrocephalus at 18 months old when he suddenly developed difficulty walking. He went from walking normally to being unable to make it a few steps without falling. After multiple scans, his doctors found a small brain tumor (tectal glioma) which impedes the normal flow of spinal fluid in his brain causing hydrocephalus. Hydrocephalus is a life altering, life threatening condition, caused by an abnormal accumulation of cerebral spinal fluid, resulting in pressure on the brain.
There is no cure for hydrocephalus, and treatment options are outdated and all involve brain surgery. Oliver is now 5 years old and has already had 2 brain surgeries – an ETV, which was unfortunately unsuccessful, and a shunt placement surgery a month later. As a parent, seeing your 18 month old go through not one, but two major brain surgeries was very difficult. We felt very alone in our situation and also knew that the tumor and implanted shunt will be something that Oliver has to deal with for the rest of his life. It is not uncommon for people with hydrocephalus to undergo dozens of brain surgeries during their lifetime.
We had so many questions about his diagnosis and treatment, which is why we turned to the Hydrocephalus Association (HA). They were there for us at a time when we really needed the support.
We found that HA has a national WALK program with walks that raise awareness and funds all over the country, but were disappointed to find that there was no walk in Indiana. The walks are entirely coordinated by local volunteers, so in 2014 we decided to start the first Indianapolis WALK. The walk is a great day for families affected by hydrocephalus to come together and get to know one another while raising funds that will hopefully one day lead to a cure for the condition.
So far, the Indianapolis Hydrocephalus Association WALK has raised over $48,000 in the two years since it began. We are very proud of this achievement but continue to work hard so that the walk can continue to grow each year. Last year we were reminded that you never know when this condition will throw another curve ball your way when Oliver had a seizure that lasted over two hours. We were taken by ambulance to the emergency room, and after many tests were told this is another complication of his hydrocephalus. It landed him in the hospital for a couple of days, but he doesn’t let any of this slow him down. He loves going to kindergarten, and playing with his little sister Kate. Despite all he has been through, Oliver is always such a happy little boy that makes everyone smile.