Eileen and Brett Linzer’s lives changed when their daughter, Quinn, died at 14 months of complications of the rare genetic disorder Niemann-Pick disease Type A on Aug. 9, 2013. In their daughter’s honor, the Linzers created the Quinn Madeleine Foundation to help other children who are fighting illnesses.
This Sunday, the foundation will host its third annual Feel the Breeze 5K and fun run at Greis Park in Lynbrook. Proceeds will go to the foundation, which grants wishes for children age 3 and under who are fighting rare diseases, and also works with a lab to offer free diagnostic testing to possible carriers of the genetic mutation that causes NPA.
When Quinn was 3-months-old, she was diagnosed with the illness, a rare disorder that causes the degeneration of the nervous system. There is no cure. Children with NPA have an abnormal buildup of toxic materials in body cells because of enzyme deficiencies.
“We have a lot of folks reaching out to us,” Eileen said. “People that knew her and people that didn’t actually get to meet her, who tell us all the time that they remember her, or they know about her, or they told someone else her story. So our foundation is definitely meeting its goals.”
Eileen said she hopes to raise $25,000 through the event — a $1,500 increase over the $23,567 raised last year. She added that about 275 people are expected to participate; 225 turned out in 2016. The event costs $30 for the 5K and $10 for the fun run.
The festivities will begin and end at Greis Park, and the route will follow a jogging path just north of Sunrise Highway on a USA Track & Field-certified course. Bib pick-up and registration are scheduled from 7:30 to 8:45 a.m. The fun run, which is open to children 12 and under and their parents, will commence at 8:15 a.m., while the 5K will start at 9. Those who register in advance will receive free T-shirts. The top three male and female finishers in each age group will earn medals.
The Linzers’ foundation has partnered with local businesses for the 5K. Each registrant will receive a ticket for one free drink at Craft Kitchen & Tap House in Lynbrook. The Rolling River Day Camp in East Rockaway and River Mill Tavern & Tables in Lynbrook are among the other businesses involved.
Pre-registration is available until Saturday at 5 p.m. at www.Quinn5K.org. Participants can also register at Greis Park on Sunday, but a T-shirt and drink voucher are not guaranteed for day-of registration.
About the foundation
The Linzers formed the nonprofit, volunteer-based organization in 2014. According to its website, only three or four children are diagnosed with NPA in the United States each year. The average life expectancy is 18 months to three years.
“Our mission is dual purpose,” Eileen explained. “One part of it, which is called Quinn’s List, is a wish-granting organization … [for] babies under age 3. And then the other piece of it is that they also run a diagnostic testing program for those at risk for carrying Niemann-Pick disease.”
Eileen and Brett discovered that they were both carriers of a genetic mutation that causes NPA after Quinn was diagnosed. Because of that, she said, all of her children were at a great risk of being born with the disorder. Their sons Colin, 9, and Reid, 7, however, did not have it.
The foundation partners with Baby Genes, a Colorado-based lab, to test possible carriers of the disease. The partnership has helped provide diagnostic carrier screenings at no charge. In order for a child to inherit NPA, both parents must have the genetic mutation that causes it. “To us, knowledge is power,” Eileen said. “… Basically to be able to say we will never have a child who would have this disease because we’re able to test in advance, there’s really nothing better than that.”
Quinn’s List began when the Linzers turned to their friends and family for ideas about the experiences everyone should have in their lifetime — which ranged from something as simple as dipping their toes in the ocean to traveling. The Linzers were able to give their daughter many of those experiences, but not everyone has a strong support system so they made her list a key component of the foundation.
Eileen noted that wishes are granted from across the country, and the organization has even worked with two children from Canada and one from the Dominican Republic. “There are no regional boundaries or eligibility issues other than communication,” she said.
After granting six wishes in 2016, the foundation awarded four in the past six weeks. Misty Merideth, an Oklahoma resident whose 1-year-old son Liam was born with 67 duplicated chromosomes that cause defects in his brain, kidneys and other organs, heard about the foundation through a friend. A wish for her son was granted in mere weeks.
“It was amazing just to have somebody recognize that these kids that are under 3 deserve a wish,” Merideth said. “We shouldn’t have to wait until they’re 2½ or 3 if they’re dying or terminal.” Liam, who is nicknamed “Super Liam,” was not expected to live past his first birthday. He turned 1 last week.
Merideth and her wife have six other adopted children, most with special needs. As part of the wish, they were able to take all the children and two nurses to Silver Dollar City in Missouri for four days at a lake. The foundation made sure their cabin was handicap-accessible and filled it with snacks.
“We had a blast,” Merideth said. “It was so fun. The cabin they put us up in was spectacular.”