Remembering Rachel, spreading awareness

FORT WAYNE, Ind. (WANE) - Rachel Ruppert wasn't given much time to live. She was diagnosed with Tay-Sachs disease when she was one year old. Tay-Sachs is a rare genetic disorder. Her parents, Chris and Michelle, didn't know they were carriers.

"Until it hits home, you don't realize how important testing is. It's a simple blood test to know if you are a carrier," Michelle said.

Right now there is no cure for Tay-Sachs. At age five, Rachel died May 1, 2009. She would have turned six on Friday.

Even though Rachel is no longer with them, her family wanted to celebrate her birthday. Saturday the gathered at her grave to release balloons. Each person said a good memory of Rachel and released his or her balloon. Tied to each balloon was a card with the national Tay-Sachs association's website on it.

"We're hoping people will find the cards and read a little bit about it and help support the cause to find a cure for these diseases," Chris said.

The Ruppert family is also hoping the CBS movie, "Extraordinary Measures" will help spread awareness about the rare genetic disorders. The movie tells the story of a family coping with two children with Pompe disease, which is another incurable genetic disorder.

"It was so different to see five years of your life in two hours," Chris said of the movie. "Everything the family goes through, from how they get the diagnosis to dealing with the progression of the disease, is everything we went through with Rachel."

Dozens of people came to the cemetery to remember the little princess who loved to have Dr. Seuss books read to her.

"It felt wonderful that even though she couldn't talk she touched so many lives during her short life here on Earth," Chris said.

Most people diagnosed with Tay-Sachs die in early childhood, usually by the age of five.