Remembering Tom

Thomas Werner, April 15, 1973-February 27, 1997

A young man with a bright future, a young man who was loved by all.

VHL ended Thomas’ life, but it didn’t ruin his life. VHL was part of what made him the brave, loving young man he was. Tom watched his eldest brother Robert, his early mentor and godfather, grapple with VHL, knowing he too had the disease. As a toddler Thomas accompanied Robert to physical therapy, making him laugh and creating amusing distractions for his older brother. Robert taught him the alphabet, how to spell and read. A sixteen-year-old and a two-year-old constant companions bonded together by a disease.

Thomas was an inspiration to his family and everyone else who ever met him. His friends, family, schoolmates and professors were constantly in awe of his talents. He was a true Renaissance man, winning speech contests, writing poetry and making movies. Thomas could do it all in spite of all his adversities. At fifteen he appeared on the Wheel of Fortune. At eighteen he was hoisted out of his wheelchair into a small helicopter for a flight into the Grand Canyon. Two short months before his death, he graduated with honors from Hofstra University’s Film School.

Thomas was a great son, a great brother and uncle. Thomas joins his big brother Robert in heaven and I’m sure they’re having a ball. We miss them both greatly. Our biggest wish is for researchers to find a way to improve diagnosis, treatment, and quality of life for all our VHL families.

Editor’s Note: Evelyn and Bob had five children, three of whom have VHL. Two of their sons died before age 30. Evelyn herself is in her 60’s and has had relatively mild problems with VHL. Her daughter Christine who does not have VHL, has three children, the youngest of whom has trisomy 18, a severe birth defect, not related to VHL. Having learned from her brothers how to persevere in the face of physical challenge, Christine and her husband take all three children on family outings, with baby Mary’s oxygen supply close at hand

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