Family who lost child to genetic disease pays it forward through volunteering

This article was published in the Dayton Daily News on May 11, 2016.

By Chuck Manker

It would be almost impossible for the Dayton Chapter of A Special Wish Foundation to grant wishes to children with life-threatening disorders in its six-county area without the help of dedicated volunteers like Anne and Tom Gniazdowski of Springboro.

Their son, Danny, was granted a wish in 2004 when he was 6 years old to Walt Disney World and other Orlando, Fla., area attractions. “Danny absolutely loved Disney,” Anne said. “They had a ball,” she added, referring to Danny and his older sister, Sarah. Danny’s favorite characters were Shrek, Buzz Lightyear, Peter Pan and Barney. “He loved Barney at Universal Studios,” Tom said.

“The wish gave us as a family the opportunity to have fun and try not to think about what you’re dealing with,” Anne said. Added Tom: “You build your life around your child’s needs and when you do something like this (wish trip), it allows you to be like a normal family.”

The Gniazdowskis are members of the National MPS Society. MPS stands for Mucospolysaccharidosis, or MPS, a genetic disease Danny had that causes progressive damage to major organs and eventually organ failure. After Danny’s unexpected passing in 2005 during routine medical tests, Anne and Tom immersed themselves as members of the National MPS Society’s board of directors. Tom was the Society’s treasurer for four years.

The Gniazdowskis were committed to the MPS board and served on it for eight years until 2014. They traveled around the country to meetings and represented the Society in other ways. Sarah, who is a junior at Miami University in Oxford majoring in special education, went on the trips, and when she was older provided child care during the meetings. Danny, Sarah said, was the inspiration for her major at Miami.

Even with all of their MPS activities Anne and Tom always remembered A Special Wish Foundation (ASW) because of the wish trip and also from attending ASW’s Annual holiday party in 2004 with Danny and Sarah. They were busy with the Society, but began volunteering at the holiday party in 2007.

After they left the MPS Society board, the Gniazdowskis started volunteering more with ASW. “We wanted to pay it forward,” Tom said. It was that first holiday party in 2004 that made them want to volunteer later with ASW.

Since the Gnizadowskis began volunteering with ASW, including Sarah when she could work it around her school commitments, they have also participated in the Annual Valentine’s Day dance, golf tournaments, First Friday fund-raisers and ASW’s 5K walk/run events. The latest run was the Superhero Donut Run on April 16 that included a 10K race with more than 1,200 participants.

“I had a blast at the Donut Run this year,” Anne said. She and Tom helped check in runners before the race that began and ended at Centerville High School with more than 100 dozen of Bill’s Donuts waiting at the end of the race.

“We’ve met so many nice people through it (volunteering for ASW),” Anne said. “It’s kind of neat when we go now because we see volunteers, and it’s like ‘Hey, how ya’ doin’?’ And it’s a cause that’s near and dear to our hearts. That’s always going to be part of us because we know what those families go through. To be able to help raise the money to grant kids’ wishes is what it’s all about. It’s a great way to get involved in your community and you can’t ask for a better organization to help.”

“My parents and I have an intense passion to work with these kids, and we really want to pay it forward through A Special Wish, which is why I know they continue to volunteer,” Sarah said.