Alex's Story

I am Alex Anderson, and I was unusually young when I was diagnosed at age four, with von Hippel-Lindau disease. I’m twelve now. Here’s my story:

At age four I was lying on my left side on my mom’s bed. She said to me ... well ... I’m not sure what she said, and never will be. That’s because I couldn’t hear from my right ear. When my mom asked me why I couldn’t hear, I said, very matter-of-factly, “This is the ear I hear out of,” pointing to my left ear.

My mom realized that something was wrong.  She took me to our pediatrician, who said to go to Childrens Hospital of Philadelphia. After a biopsy, we were informed that I had an endolymphatic sac tumor (ELST). That is how I was diagnosed with VHL. I had the ELST removed the following week, in a surgery that took 14 hours. Since then, I have devoted much of my time to the epic battle against VHL disease, trying to raise money and awareness to help find a cure.

My life is a bit different from that of other kids. I am constantly monitored, to make sure nothing is wrong. My mother researches all the literature on diet for cancer prevention, and I do my best to follow those guidelines.  My friends and family are all so great, though! They help me with fundraisers, and support me prior to operations! I’ve had four eye laser surgeries to eliminate about 24 retinal hemangioblastomas. I don’t know where I’d be without the support of my friends and family at home, and my “other family,” the VHL Family Alliance, a network of VHL families all around the world. 

And now, with my fundraiser, Alex Jay VHL Day, in progress, they are better than ever!

One of my main goals for AJVHLD is to get kids involved in fundraising.  I have often felt that kids feel powerless in today’s society.  Giving them an opportunity to participate in helping to cure cancer also gives them a feeling of significance.  When I’m fundraising, I always feel more significant in the world, like I really matter.  I have been lucky to be able to pull together a fantastic team of middle-schoolers to help me with the fundraising stands in my small community on May 9th. Each student is excited to help in any way they can, and the teachers have been so supportive! We all feel like we can make a difference. 

Another one of my visions for the big day would be to have all participants in the VHL Family Alliance USA do the same fundraiser from coast to coast. Other countries have other cultures and may have other fundraising ideas which will be just as fantastic, but since we will all be working together, I know it will be a huge success. That’s my mantra. “Working together is the one true path...”

It will be a truly inspiring day, when the world can unite for a cause, despite wars and disagreements. We are all on this Earth, so we are all family. And family helps family. We can be an incredible force when united. 

As printed in the VHL Family Forum 17:2, May 2009. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.

my story