Birthday Fundraiser in Canada

In August 2000, our eldest son (then 21) was diagnosed with 2 hemangioblastomas of the cerebellum. After three neurosurgeries, they were able to successfully remove both tumors. We soon discovered, however, that removing the tumors did not mean that our son was no longer in danger.

It was his neurosurgeon who first explained to us that our son had developed these tumors due to having a disorder we had never heard of before, Von Hippel-Lindau. Over the next several months and after numerous appointments with a variety of specialists, we discovered that it was suspected that our younger son, who was legally blind in his left eye from the removal of a tumor he had developed when he was 17, also had the disorder.

Since then our family has gone through a whirlwind of testing. Unfortunately, genetic testing has been unable to help us define who exactly has the disease in our family and who may not, since our sons’ mutations have proven to be hard to find.

Wren B., age 10

We have two other daughters who now go through the regular screening process to ensure they remain healthy. Our youngest daughter turned 10 on January 10th, 2004. This year for her birthday party, in lieu of presents that she really does not need as she has so many toys and clothing items, she opted to ask for donations to either our local food bank, or to the Canadian VHL Family Alliance for research into finding a cure for this disorder.

I helped her to draft up an invitation that would explain what she was requesting and why, and she invited 13 of her friends to her party. The day of her party I was a little concerned that she might regret not having any presents to open, but when I asked how she was feeling about her decision to request donations, she reminded me that she really wants her brothers to be around for a long time so they can see her graduate, get married and raise kids of her own. She also said that she might have this disorder too -- and so could I or her sister -- and so she felt what she was doing was really right.

As she opened each envelope from the kids who came to her party, I was so impressed with both her and them. As the dollars they were donating on her behalf added up, you could see their eyes light up. I believe they were all feeling as though they were a part of a bigger whole, and that with everyone pitching in they had done something really amazing and worthwhile. When I counted up the final amount of $175.00 their eyes widened in amazement and they all clapped and exclaimed, “Wow!”

I promised that I would ensure that you knew exactly who contributed to this donation and why. Thirteen incredible children and their families, along with our daughter who we are really proud of, wanted to make a difference in someone’s life. The following is the list of each of the children’s names: Ben, Catherine, Michelle, Riley, Cole, Elise, Meaghan, Mikaela, Carmen, Samantha, Juliana, and finally our daughter Wren.

Please accept this $175.00 gift in honour of Wren’s 10th birthday, and of her two older brothers, Derrick and Justin V.

As printed in the VHL Family Forum 12:2, August/September 2004. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.

mystory