We received an email today from Wells, a 27 year old who was diagnosed with hydrocephalus at age 5. Honestly, I teared-up as I read it. We’re thinking of you, Wells, and are proud of the courage with which you face each and every day. Remember, Wells: YOU ARE NOT ALONE!
“At five years old I was a happy, much loved, little boy who just had always walked on the ball of my foot. My Mom always worried that this wasn’t normal, and took me to many, many doctors trying to find out what was wrong. Finally, many appointment’s later, I saw a Neurosurgeon who was world renowned at Children’s hospital in Detroit Michigan.
My family learned I have Hydrocephalus. They told me I needed a SHUNT placed in my brain. Little did any of us know that I would be in 46 times for revisions by the time I was 25, one of which ended in a stroke with a six week stay–nothing has been ok since. After years of surgeries and shunt problems, I now have almost no short term memory and more problems than can be told in a few short paragraphs.
I’m frustrated, lonely, because people know I’m different, and they often ignore me, or don’t give me a chance.
I’ve lost my driving privileges and had to move back home. I know I’m right in thinking my life shouldn’t be this way, (having my shunt stop working frequently, so I am in an d out of the hospital all the time, and finding my ability to do things decrease every year as I grew)–Some days I can make the best of it and honestly, other days I’m depressed.
I am now 27 years old and I never know if I’ll be in the hospital tomorrow or not. It is hard to plan and prepare for a regular job and life.
I thank you for all your efforts to find money for hydrocephalus research, so maybe some other little kid can be spared almost not knowing how a normal healthy life could be.
My Mom who knows me so well, and my Dad who can’t fix me like he can fix almost anything else, helped me write this. Until better treatment is found, we will struggle on and always strive for just one more good day!!!” ~Wells B.