Five years ago, Todd and Danielle Osleger of Bethel Park received “life-changing” news regarding their son.
Sam had Ataxia-Telangiectasia. A few months later, their daughter, Emily, received a similar diagnosis.
A-T is a rare genetic disease for which there is no cure. Average life expectancy is teens to early 20s.
“As you can only imagine, it was not easy to accept that the only children we have would have to live their lives with such a horrible disease,” said the Oslegers.
However, they noted their children are coping. They have not let the disease slow them down.
In fact, the pair are thriving.
A second-grader, Sam enjoys learning. He plays with friends and tells jokes at school. He and Emily both love gymnastics, and they play in the Miracle League, an adaptive-baseball program.
A kindergartener, Emily also loves to make friends, participate in Girl Scouts, and create art.
“They are true outdoor lovers,” added the Oslegers. “They are always happy to go to playgrounds, on bike rides, and for nature hikes.”
Shortly after their children’s diagnosis, the Oslegers connected with the A-T Children’s Project. In addition to connecting families with the disease and offering support and resources, ATCP has been critical to the Osleger family’s outlook.
Founded by parents of children with the disease, its primary mission is to support research that will accelerate the discovery of a cure.
“A little over a year ago, we received the exciting news that an A-T child would be receiving (antisense oligonucleotide) gene therapy in a few months. This could be the first step in realizing a cure,” the Oslegers said enthusiastically. “Of course, this comes with a hefty price tag and would not be possible without generous donations,” they noted.
The Oslegers and their extended family, which includes grandparents Bob and Sue Osleger as well as friends Speer Reuy and Barry Zadnik, are doing their part.
For the third consecutive year, they will host the Swinging for Sam and Emily Golf Outing on July 26 at Cedarbrook Golf Course in Belle Vernon.
Check-in starts at 8 a.m. Golf, featuring a scramble format, begins with a shotgun start at 10 a.m.
Tickets are $400 ($440 after July 19) and include golf, cart, practice range balls, continental breakfast, lunch, dinner and skill prizes. There will be basket auctions, 50/50 raffle and opportunity to win a car. Dinner-only tickets are $25.
Sponsorship opportunities are available. Auction items are also needed.
Checks should be made payable to Swinging for Sam and Emily Golf Outing.
The ATCP will receive all proceeds raised through the golf outing. According to the Oslegers, this multifaceted organization relies on donations to continue its scientific research necessary to improve the lives of all A-T families and get closer to finding a cure.
“The disease is unrelenting in the way it affects a multitude of body systems,” they said. “So we thank everybody in advance for any contributions they can provide for this year’s outing. With their generosity, we hope to have a fun day of golf while aiding kids everywhere in their fight against A-T.”
Sam and Emily’s grandfather agrees. Obviously the proud papa, Bob Osleger said, “Sam and Emily are two adorable, loving kids. They want for nothing. But, we do know what lies ahead in their future,” he added somberly.
“Proceeds raised from this golf outing will be used to help fund research to hopefully find a cure for this devastating disease.”
Osleger added that ATCP is a wonderful organization committed 100 percent to establishing some form of comfort through genetic research.
“Unfortunately this comes with a huge monetary price tag,” he added. “Anything that our friends can do will be greatly appreciated.”
Contact 412-496-4810 or email email@example.com for more details or registration.
Visit www.atcp.org for more information on the disease, research and upcoming events.