I was almost fourteen years old when I had my last Valentine’s Day with my father. When I received the last newsletter from the Alliance and read about David running a marathon, I decided it was time I did something to help support the VHLFA. My husband Darrin and I have two daughters, Danielle and Rebecca, and I love doing pageants with my girls. So 18 years after my father’s death from kidney cancer, I decided to sponsor a pageant in his memory.

At the time of his death in 1984, a physician recommended that we children be screened for possible problems. A scan revealed that I had a small tumor on my pancreas, but my mother was told not to worry about it. Even earlier, at age 5, doctors had discovered a tumor in one of my eyes. They told my parents it had scarred over and not to be concerned.

When I was 18, I began having dizzy spells. Doctors discovered and removed a tumor from my ear, and later another from my brain. In 1992 I was diagnosed with von Hippel-Lindau. One of my sisters also has the disease. We knew nothing about it, so I began doing research.

It quickly became clear that VHL is what had killed my father. Maybe if we had known more than about treating it, he might still be alive.

Six years ago when I was pregnant with my first child I had severe back pain and numbness in my left leg. Tests revealed a tumor on my spine. After the birth of Danielle, followed swiftly by spinal surgery, I had to undergo physical therapy to regain the use of my paralyzed leg. I felt a lump in my abdomen, but the doctors told me it was nothing to worry about.

Six weeks after my second daughter’s birth, the lump was still there. I would lie down, and it would feel like I was lying on a tennis ball. Tests revealed a malignant tumor the size of an orange on my pancreas. Doctors were planning to remove my pancreas, when I read an article in the VHL newsletter about pancreatic tumors. I realized that radical surgery was not my only option. I went to the U.S. National Institutes of Health (NIH) where they removed 80% of my pancreas, part of my stomach and small intestine. But they saved enough of my pancreas that I am not diabetic! They also found an endolymphatic sac tumor and successfully removed it. My doctors at home had thought it was only scar tissue.

So you can understand my gratitude to God for the VHLFA newsletter! It has led to better medical care, and truly saved my life. I still have tumors in my neck, cysts on my kidneys, and a few brain tumors, but I’m not giving up. VHL is slow growing. I’m like everybody else, I just have more scars.

The pageant came together in a month. It was held at the Illinois Centre Mall. We had a total of 73 entrants — way beyond my hopes. We got a lot of wonderful media coverage which helped tremendously. We were also blessed with donations of money for trophies and gifts for the children. Each child received a crazy straw and a coupon for a cheeseburger from McDonald’s, candy hearts from Target, and Valentine candy from Schnuck’s grocery store. The overall boy and girl winners each received a $50 savings bond from Old National Bank and Banterra Bank, a 2-hour limo ride from P&B Limo, a plastic picnic table from Wal-Mart, a teddy bear from Kroger, and a portrait package from J.C.Penney and Don Barden Photography. We gave out 42 trophies: first, second, and third place in each age group for both boys and girls. Miss & Mr. Sweetheart were chosen in each of seven age groups, from 0-6 months to 5-6 years. It was such a success, I hope to make it an annual event!

Several local newspapers printed my VHL story and the details of the contest, encouraging people to register in advance for $20, or on-site for $25. The Mall provided advertising help — they even ran TV ads! They set up the stage, chairs, PA system and everything. Two TV channels covered the event.

We are very grateful to the many volunteers who donated their time, and the many who gave extra donations. My Mom, Marsha, and Darrin’s Mom, Cherryl, were super help registering contestants. Danielle, Rebecca and Crysta passed out candy. Nikki helped keep them supplied, and did a super job getting the trophies passed out. Darrin was the official money taker (he was really good at that), and he was also the official vote counter and judge harrasser!

My sister Krystal got several donations that helped out tremendously and my sister Wendy rounded up several contestants. Kay passed out many forms that attracted contestants. I could just go on and on and on. I’m grateful to all!

Someday we won’t have to do fundraisers any more for VHL because they’ll find a cure. But that’s why this is so great because we’re one step closer, one pageant at a time! I know my Daddy would be so proud!

As printed in the VHL Family Forum 10:1, March 2002. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org.