Participants, supporters, and family, pose for a photo before the golfing begins.
Ryan Evans | Times Leader
Golf tournament raises funds for foundation, awareness of HLH
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Golfers await the start of the day’s fun, in the name of a good cause.
Ryan Evans | Times Leader
Michelle Schulze, left, and Lynn Carle, right, hold photos of their sons, Liam and Ethan. Both passed away very young due to complications from HLH, an aggressive and lesser-known disease. Schulze started Liam’s Lighthouse Foundation in honor of her son. Carle was introduced to Schulze through Facebook, and the two have been advocating together to raise awareness ever since.
Ryan Evans | Times Leader
Lynn Carle, left, and Michelle Schulze, right, help a participant get checked in.
Ryan Evans | Times Leader
Rick Hengst, Director of Gold at the Sand Springs Country Club, makes announcements before the days tournament commenced.
Ryan Evans | Times Leader
Attendees for this year’s golf tournament check out the raffle baskets and other donated prizes after registration, awaiting for the ‘shotgun start’.
Ryan Evans | Times Leader
DRUMS — When faced with unfathomable loss, some persevere through the unthinkable, instead using their pain as a pathway to helping others, raising awareness and honoring memories.
Michelle Schulze and Lynn Carle are two of those people.
After kicking off the Liam Schulze Annual Memorial Golf Tournament on Sunday afternoon at Sand Springs Country Club – a fundraiser for the Liam’s Lightouse Foundation – the two took some time to talk to a reporter about their mission.
Schulze, a Pittston native now living in Colorado Springs, founded Liam’s Lighthouse Foundation after losing her son, Liam, at just 20 months old to a lesser-known disease called hemophagocytic lymphohistiocytosis, commonly referred to as HLH.
“The doctor said, ‘It’s either cancer or HLH, and you should hope for cancer,” Schulze said, acknowledging that the disease is fast-acting and highly fatal.
After her son passed in 2009, Schulze began to notice just how little information about HLH is out there.
“I felt like I needed to finish his fight,” she said, and established Liam’s Lightouse shortly after.
In the time since, through events such as the golf tournament, the organization has raised just under $1 million to provide education and raise awareness about HLH.
Carle’s son, Ethan, became very ill in March of 2012. Like Schulze, Carle and her family had trouble getting an accurate diagnosis initially. After some time, it turned out to be HLH. The general treatment protocol for HLH includes chemotherapy and steroids. After Ethan’s passing, a friend of Carle’s pointed her in the direction of a Facebook friend who had the same experience. It turns out that friend was Michelle Schulze.
“Michelle and I were connected through social media and ended up finding out that we were basically living similar lives across the country. Same age, our boys were almost the same age, same diagnosis, she’s from almost in my backyard (Carle is a Hanover Township resident). And so, what started out as volunteering and just looking for answers became us just dedicated to making a difference in helping others so that other mothers don’t have to bury their children,” Carle added.
With the two mothers now intertwined with Carle serving as an active board member, Carle also noted that now Liam and Ethan are now bonded.
Reflecting on Sunday’s golf tournament, Schulze explained that it began when Liam was still alive, held by another family who wished to help raise money for the Schulze’s who were going through hard times paying medical bills and travel expenses. When Liam passed and Liam’s Lighthouse was established, Schulze kept the golf tournament going as a fundraiser, right here in the region she grew up in.
“One of the biggest things I can say about this area that I grew up in, it’s truly ‘The Valley With a Heart,” Schulze explained. When they were searching for a bone-marrow donor for Liam, she remembered how over 1,800 people from all walks of life showed up in an attempt to help. “The Valley never disappoints,” she said.
Golfers pay a registration fee to participate, and funds raised from the fee, as well as other donations go right back to the mission: increasing awareness of HLH, funding research, and spreading the word among physicians and families alike. Carle and Schulze both agreed: HLH is not rare, it’s just rarely diagnosed, and spreading the word may make all the difference.
There were also a large number of baskets, prizes and other raffle items donated from a network of supporters.
In closing, Schulze reflected on the importance of advocating and sharing. Carle added that no matter how many times it may still hurt to tell the story, simply telling it helps to raise awareness and could potentially save a life.
Carle added people should also know that there’s hope.“For Michelle and I, we didn’t get the outcome we wanted, but that doesn’t mean other people can’t find their outcome. That’s why we do what we do.”
Recently, back in Colorado Springs, Schulze was able to give back to the local Ronald McDonald House after their support for Liam, where she and her mother, Rose Ann Podmonick stayed for about six months at the Cinncinnati center. A donation allowed the Colorado Springs center to build a Liam’s Lighthouse play structure for the playground children — a further testament to selflessness and love in the face of great adversity.
For more information on Liam’s Lighthouse Foundation, as well as opportunities to get involved and/or donate and stay up-to-date with events such as the golf tournament or their annual 5k (whose location is changing for 2023) visit www.liamslighthousefoundation.org.