Fun and fundraising

Beth Smith’s Triathalon

by Beth Smith

Hello friends - I did it!!!

I completed the Dam Triathlon (The Beaver Strikes Back) in Amesbury, MA on July 9, 2011 in 1 hour and 30 minutes, 10 minutes better than last year’s time. The weather was perfect and the race was a lot of fun. I am already looking forward to next year. I just wanted to take a moment to thank you again for your generous donation to VHL Family Alliance. I’ve managed to raise $3,564 so far for VHL Family Alliance. I am so grateful for your generosity each year. Thanks to your help!

Below is my story about VHL and the impact it has had on my family.

I was diagnosed with VHL when I was 20 years old. I didn’t have any symptoms, but lost my father when I was an infant to the disease. My oldest brother David was also battling VHL at the time. He fought for over ten years, but eventually lost his battle 7 years ago at the age of 38. I was given the choice of DNA testing and decided that I needed to know. The “not-knowing” was worse for me. When I received the news that I did in fact have VHL, I was upset, but decided to use the diagnosis to empower rather than overwhelm me.

Since that time, I have been having yearly screenings, MRI’s and eye exams. I have been extremely lucky to this point with only a few small tumors in my brain and one in my pancreas. Right now, we are just watching them closely. I try to eat right and exercise to keep my body strong and healthy so that it has its best shot at fighting this disease.

I also have three small children. My 6 and 4 year old both have VHL as well. We had them DNA tested at 6 months of age, again deciding that knowledge is power. It is not the diagnosis that we had hoped for, but we now know to have them screened regularly and we will deal with issues as they appear.

Thankfully, at this time they are both happy, healthy children. I hope that I can be an example for them as they get older and have to face this illness. I also try to be an active participant in fighting this disease. I spread the word to everyone I know and try to raise money at every opportunity.

Rick Bracey 29er Softball Tournament 2011

Bracey/Hazeldine families & the 29er Tournament Committee

What an amazing day and a great tribute to Rick. We were challenged with some adversity (rain, puddles, and not enough Advil). Then in true Ricky fashion, we finished off with sunshine and a great final between the Rummages & the Big Dogs who came off the porch to win the tournament! The tournament was filled with friends and family having fun while still being competitive, exactly how Rick would have liked it.

An estimated 170 attended this year’s Rick Bracey 29er Softball Tournament—fun & fundraising event on Saturday, June 18th at Softball City. Thanks to the overwhelming support by all who participated and donated, we raised an unprecedented $11,700—more than doubling our goal, an amazing amount being donated to the Canadian VHL (von Hippel-Lindau) Family Alliance. Please keep your eye out for the Peace Arch News for coverage of our tournament.

Thank you again to all our committee members, volunteers, coaches, and our dynamite 50/50 sales girls! We would also like to thank the VHL community, friends, and family who supported us in our goal of raising awareness about VHL while having fun and fundraising.

Save the date! Next year’s tournament will be held on Rick’s birthday, Saturday, June 16th, 2012. Early registration will be key to ensure you are not disappointed. We will send registrations out in March, 2012.

We thank all those who participated and encourage you to visit www.vhl.org to learn more about this terrible disease.

Shana's Mother's Day Run

Exerpts from www.vhlmymomandme.blogspot.com

It started at the end of March. Shana wasn’t feeling very good. Headaches, dizziness...the words that scare me the most. She went to the doctor, and then you have to wait for a referral that never comes.

On April 15th, she went to the ER. I got a call in the middle of the night that they were keeping her; there was a tumor and some cysts that they needed to remove.

As I hang up the phone, a dark cloud comes over me. I was remembering my mother’s surgery last summer—dread, fear, sadness—and worry for my daughter. What she must be going through right now.

 When my mother had her surgery, I knew she would be having surgery, but I never imagined it would be immediately. When I got to the hospital, she was sedated and tied to the bed. They said she was fiddling with the IV’s. I knew that this is the way my mother saw—through her fingers—she wasn’t fiddling; she was looking, and she was sedated. I hope she knew we were there. I kissed her and told her I’d be “right there” waiting for her to come back. I never saw her again. I couldn’t let this happen with Shana!

We went to the Loma Linda University Medical Center is in Loma Linda, California After several wasted days and frustrating missteps by the hospital staff, they finally took her off to surgery. During the surgery, we got a text saying the surgeon wanted to speak with us! I’ve seen it on TV many times, but never experienced them calling us into a special room?!

The surgeon came in. I could barely talk, but I asked him, “Is she ok?” He said “yes, the other surgeons are closing.” He said that everything went as planned. I gave him a big hug. We went back to the Waiting Room and waited for her to recover in the ICU.

I could see in her eyes that Shana was okay. She was tired, weak, and needed rest, so we limited the visit to just minutes.

The next day Shana had already been out of bed doing laps around the nurses’ station. She only spent 12 hours in ICU. She is so strong—she amazes me!

She came home on Thursday...13 days in the hospital, 4 days after surgery.

I feel like I’ve been at the “starting line” of a race for the past 10 days. We planned a Mom’s Day Run in memory of my mother and in honor of Shana. Shana was determined to be there, and she was (13 days after surgery). We had a good turnout despite the previous month. We raised $1,500 for VHL!!!

After the Run, we went to the sand and had a moment with my mom. We miss her so much and know she is proud of us today. We will honor her memory every day, especially Mother’s Day with the Mom’s Day Run, raising money and awareness for VHL in her name!

Outdoor Workout for VHL

by Susan Milliken

On Saturday, August 27th in Watertown, MA, Jeanine Babineau led a vigorous workout through the Ultimate Boot Camp to help find a cure for VHL. Twenty people signed up and worked up a good sweat, and then Maryanne and Jim hosted a raffle, which included a beautiful afghan that she made and a candle basket. I was so glad to be a part of a day that was led by such fun and energetic people.

London Marathon Fundraiser

Chloe D’s sister Jo completed the London Marathon on April 27, 2011. We raised an unprecedented total of £3400!

Massive thank you to every single person who put their hand in their pocket/wallet/bank account and for all the good luck/congratulations messages as well as all the prayers I needed to get round! It was definitely a once in a lifetime experience, not to be repeated! I also know this wonderful donation will be very much appreciated by the UK VHL support group.

As printed in the VHL Family Forum 19:3, September 2011. 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