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Rallying for a Friend

October 02, 2012

By Ryan Wronkowicz, Sports Information Director, Lourdes University (Ohio)

When the Lourdes women's volleyball program took to the court last month against Madonna University (Mich.), the Gray Wolves were not just taking on the Crusaders.  They also were helping battle Progeria, a rare fatal genetic disease characterized by premature and accelerated aging in children.

The Gray Wolves raised money to help the Progeria Research Foundation's search for a cure, selling Lourdes volleyball t-shirts, as well as setting up collection cans before and during the match.  The team also honored Kaylee Halko, a nine-year-old from Northwest Ohio who is affected by the disease.

This effort wasn't a one-time fundraiser but is part of the team's year-round effort to fight Progeria, also known as Hutchinson-Gilford Progeria Syndrome (HGPS). This is the second consecutive year that Lourdes has helped raise money to fight this disease that affects just one out of eight million children.  There are currently 96 known cases in the world, including 16 cases in the United States.  The children afflicted with this disease age nearly 10-times faster than people without the disease, and they will suffer from symptoms such as loss of hair and body fat, stiffness of the joints, and heart disease, that are associated with aging.

The Progerial Research Foundation reports that all children with Progeria die of the same heart disease that affects millions of normal aging adults (arteriosclerosis), but instead of having these issues at 60 or 70 years of age, they may suffer strokes and heart attacks even before age 10.

"It means a lot to me, as a graduate of Lourdes, to see the school and especially this team support both my daughter and the Progeria Research Foundation," said Tim Halko, Kaylee's dad.  "She loves coming to things like this and seeing the volleyball girls.  It makes her feel special."

"I had a very nice time," Kaylee said after the match.  "It was really cool that the team tied the game up so many times.  The girls are really nice and super cool to be around."

Lourdes fell to Madonna 25-18, 25-16, 25-23, but set three saw 13 ties and three lead changes, much to Kaylee's excitement.

Kaylee was born in 2003, the same year the Progeria gene was found, and she was diagnosed with the disease one year later.  She doesn't let her disease slow her down though. The free-spirited girl was running around the court after the match, spiking the volleyball over the lowered net and having fun like any other nine-year old girl would. 

Lourdes' efforts for the Progeria Research Foundation will continue as the Gray Wolves will be helping with "Kaylee's Course," a 5K race and two-mile walk on Oct. 13.

"It is great for us to use our platform to benefit a great cause," said Lourdes head coach Greg Reitz.  "Meeting Kaylee, as well as her family, has been great for our program."

Senior libero Kirstin Kirk counts herself as one of those impacted by Kalee's fighting spirit. "She is just the happiest person," Kirk said. "She enjoys life and makes everyone smile.  She's such an amazing little girl.  This is the second year our team has been able to raise money for the disease and be around her, and I'm so glad we have had the opportunity to do it.  It also makes us appreciate what we have even more."