Volleyball | 9/16/2014 11:02:00 AM

It's going to he a special day for the Falcon volleyball team on Sept. 26 when it plays a match with four-month old Leo Russell Babler in everyone's heart and mind.

The match has been designated the Lionhearted Fund event.

Leo is the grandson of Falcon women's assistant basketball coach, Mike Babler, and his wife, Mary. He is the son of Ryan and Lewann (Ihrke) Babler. Both are graduates of UWRF.

Leo was born on May 5, 2014. After a completely healthy pregnancy, it was a shock when Leo spent his first month of life in the St. Paul Children's Hospital NICU, due to the diagnosis of an extremely rare genetic disorder. Leo's disorder is a form of dwarfism, Rhizomelic Chondrodysplasia Punctata (RCPC), and said to be a lethal form of skeletal dysplasia.

RCDP occurs in fewer than 1 in 100,000 births, with less than 100 known cases worldwide. Characteristics of RCDP can include: shortened humeri and femur bones (upper arms and legs), cataracts, growth deficiency, mental deficiency, seizures, calcium deposits in joints, aspiration and joint stiffness. Leo has had every test imaginable performed - fortunately his brain, heart, lungs and kidneys look great. He has had six surgeries in his short life with more likely to come.

While doctors anticipate a life of challenges, Leo has been surprising everyone with great strides! Each child and each case of RCDP is completely unique, making a doom and gloom attitude unacceptable for his parents. If you know Ryan and Lewann, you are well aware of their love for life, positive outlook and persistently driven work ethic. Ryan and Lewann are doing all that they can to encourage Leo to have the best life possible at his highest potential.

As of Sept. 17, about $13,000 has been raised towards the goal of $20,000. According to the Lionhearted Fund web site (http://www.gofundme.com/cfgmts): "Every weekend surprises us!! Nearly $1,200 of donations over the weekend and we went over 1300 shares of this Lionhearted Fund page. The thing that thrills us the most was the people who had never shared this page that did this past weekend!! Thank you - you never realize how just sharing the page helps Leo - 20% of our donations have come from people that we don't know that just want to give!!"

All financial support will be used toward Leo's current medical bills and continued care, including alternative therapies that have been proving to be effective in many ways. Any donation will be met with whole-hearted gratitude from Leo and his family. 

People may donate money by going to the Lionhearted Fund web site at: http://www.gofundme.com/cfgmts

The Sept. 26 match, against UW-La Crosse at the Karges Center, will feature a Red Out event. Red Lionhearted t-shirts (see below) are on sale for $15 and can be purchased from Falcon women's basketball players. 

"We all have some cause that we are passionate about, for me it hit home as I visited with Mike about Leo," said Falcon volleyball Coach Patti Ford. "The volleyball team is excited to join in supporting Leo and his family and the Lionheart Fund. We think it is important that we recognize and support one of our own – and athletics is a great venue to get the word out and bring awareness to this great family."





Ryan, Lewann and Leo - what a great looking family!


Front of Lionhearted Fund t-shirt.


Back of t-shirt. Ryan wore No. 9 on his
soccer jersey.