Rare childhood disease sparks grassroots campaign

“Associated Press

Published July 21 2005

STAMFORD, Conn. — At nearly 3, Naomi Tyrrell falls down more than most children her age. With each fall her parents’ fears grow: Is this the inevitable decline of their precious daughter?

Naomi has Niemann-Pick Disease, a rare, little-known genetic childhood illness that leads to a progressive deterioration of the nervous system and is fatal.

“She stumbles and falls a lot,” said Leon Tyrrell, her father. “Every day you’re like, ‘Is she getting worse?’ “

Naomi’s parents, who live in Shelton, aren’t sitting by watching their daughter deteriorate. They’re among a growing number of parents across the country who are waging a grassroots campaign to raise awareness and money for research to find a cure.

“I feel like we’re in this desperate race against time,” said Lorna Tyrrell, Naomi’s mother.

Unlike other diseases, the parents have no high-profile celebrity to draw attention to the devastating disease. With only 1,700 known cases worldwide, about half of them in the United States, the disease gets government funding of less than $2 million annually through the National Institute of Health Institute for Neurological Disorders and Strokes, according to the National Niemann-Pick Foundation.

“Unless you get a Julia Roberts to testify before Congress, you’re not going to get the exposure,” said Hunt Ozmer, chairman of the National Niemann-Pick Foundation. “The burden falls on the shoulders of the parents to go out and ask the communities for their support.”

The disease has drawn some attention. James Brown, co-host of the Fox NFL program, serves as national spokesman for the foundation. Actor Richard Dreyfuss attended one of the fundraisers in Connecticut. Mike Parseghian, son of the famed Notre Dame football coach Ara Parseghian, and his wife Cindy have raised millions of dollars through a foundation to fight the disease that has killed two of their children.

Most of the efforts involve parents of children with the disease. Last Sunday, Naomi threw out the first pitch at the Bridgeport Bluefish minor league baseball game. The ceremony raised about $5,000.

“She was very excited by all the attention,” said Lorna Tyrrell.

Earlier this year, Pam Hunt of Howley-in-the-Hills, Fla., and Lynda Reger of Ontario, Canada, biked more than 3,000 miles for 55 days across the country to raise money and awareness for Niemann-Pick. Reger’s niece and nephew died of the disease.

In Alabama, a bass fishing tournament was held last month for Lee King, who has the disease. A Harley bike parade was held last month in Wisconsin for Stacey Vorpahl, who died of Niemann-Pick at age 19 last year.

“We used to be lemonade stands,” said Rhonda Brown-Kehoe of Rhode Island, another active parent. “Now we’re going into bigger events.”

A golf tournament is being planned in Virginia for Ozmer’s 20-year-old daughter, Hunter, in September. She’s had multiple seizures because of the disease.

“She is losing her ability to speak and walk and she can no longer swallow,” Ozmer said.

The Tyrrells are coping with the early stages of Niemann-Pick. Their daughter is a typical child in many ways. She likes to take a dollar from her father’s wallet and ask for “Naomi cream,” her word for ice cream.

She also likes the ducks in the pond in the family’s backyard.

“In the morning, she’ll push open the screen door and yell ‘Duckie,” her father says.

The family raises money for Niemann-Pick research by selling thousands of wrist bands marked with their mantra: Perserverance. But there’s a balance. Lorna Tyrrell says they want to spend every second with Naomi, but also throw themselves into fundraising at the same time.

“It’s only by the grace of God that we’re dealing with this,” Leon Tyrrell said. “God has allowed it to happen, so we can find a cure so future generations of children who get diagnosed with this have a cure for it instead of this terrible uncertainty about the future.”