When Michelle Slezak Schulze graduated from Misericordia University as a physical therapist in 2001, she knew she wanted to help people. She never imagined the turn her life would take and that she would find herself at the helm of a national foundation trying to save the lives of children after the death of one of her own.
Her story of love, grief and carrying on the Misericordia mission of service to others starts seven years post-graduation.
Shelley, as she is known, had earned both bachelor of science and master of physical therapy degrees from Misericordia. She and her husband, Chris, were working and living in Colorado Springs, Colo., when they their son, Liam, was born in January 2008. Their bliss was cut short when Liam began spiking high fevers at four months old.
Their life was consumed by ER and pediatrician visits, diagnostic tests and trips to hematology/oncology specialists in search of an explanation for why their baby had a distended abdomen and swollen lymph nodes, was jaundiced and in inconsolable pain.
After ten months of searching, a bone marrow biopsy finally brought them a devastating diagnosis. Their 14-month old had hemophagocytic lymphohistiocytosis (HLH), a life-threatening immunodeficiency characterized by an overabundance of white blood cells that cause the body to attack itself. It is a rare disease that few doctors and even fewer parents know exists.
Desperate for help, the Schulzes traveled 1,200 miles to the Cincinnati Children’s Hospital, where Dr. Lisa Filipovich, M.D., a leading expert in HLH, took on Liam’s treatment. She attempted to make up for the time Liam went undiagnosed with aggressive chemotherapy and steroid treatments, and eventually a bone marrow transplant.
Sadly, of the approximately 13 million people in the world on the bone marrow registry, there was not one suitable match for Liam. Unable to wait, the Schulzes were forced to use umbilical cord blood for the transplant. The process required harsher chemotherapy and lessened the likelihood of success.
After contracting a virus that his immune system was unable to fight, Liam, at age 20 months, died in his mother’s arms in September 2009.
Schulze was devastated knowing that her child might have been saved had she, Chris and the doctors been more aware of the HLH symptoms. She chose to channel her grief into a purposeful mission to increase HLH awareness, and save others from the pain her family had suffered.
“I can’t love him in person, but my work with the foundation is the way I love him here on Earth,” she explains. “I need to make sure that he did not suffer in vain.”
The immediacy of the need was soon made clear. Liam’s harrowing story had spread through the ranks of Schulze’s Misericordia family, including her Cougar softball teammates and fellow alumni. When she heard that the daughter of occupational therapist Kelly Stenelli Lindenberg had also been diagnosed with the disease, Schulze reached out to her. Fortunately, Miranda Rose Lindenberg was able to receive life-saving treatment and is a histio survivor.
Schulze launched Liam’s Lighthouse Foundation (LLF) shortly after Liam’s passing. The foundation has a three-fold mission: to bring awareness to doctors and families of HLH and other histiocytic disorders and the need for bone marrow donations; to bring histio families together for support; and to fund research for safer, more effective treatment methods and ultimately, a cure.
“This disease is so highly fatal and so unpredictable that it is worse than most cancers,” Schulze sorrowfully explains. “Many die without a diagnosis because of its rapid, fatal nature, so we really do not know how rare it is.”
Because HLH qualifies as an ‘orphan’ or rare disease, it receives little government funding for research.
With the help of social media, a strong network of friends, and the power of a mother’s love, Schulze has grown Liam’s Lighthouse Foundation to the international level. Fund and friend raising began in 2009 with the First Annual Liam Schulze Memorial Golf Tournament held in Drums.
The awareness campaign went national in January 2010 when three supporters took a LLF banner and poster-sized picture of Liam to the Today Show audience to increase awareness and honor Liam. Several pediatric physicians wrote to Schulze afterward thanking her for helping them learn about HLH.
From this, an annual NYC Histio Awareness Campaign was born and now involves more than 200 histio family members and friends from as far away as Australia, Canada and the United Kingdom. The foundation added its first “5K to Fight Histio” walk/run in New York City in July 2013. It drew 216 participants.
The weekend of events included a dinner cruise for families and a battalion of supporters armed with posters appearing in the crowds outside the Today Show and Good Morning America (GMA). Schulze met with GMA’s Robin Roberts, herself a bone marrow transplant survivor, and talked to the show’s producers about doing a histio awareness story.
The Foundation was able to make its first $100,000 research grant to Cincinnati Children’s Hospital Medical Center in 2012. They presented a second grant of $50,000 in 2013.
Schulze’s Misericordia friends have rallied to help the cause. Softball teammate Jennifer Dessoye, OTD, MS, OTR/L, is now an assistant professor of occupational therapy at the campus. Dessoye, Lindenberg, and health science graduate Alicia Rybka Richards, participated in the 2013 race.
“Shelley has always been the most incredible person,” says Dr. Dessoye, who lives in Drums and helps organize the annual golf tournament. “After what she has gone through, her actions every day teach us how to make life better. She has made me a better person, friend and mother…and has helped me realize just how important life is.”
Shelley and Chris are comforted in knowing that Liam’s death was not in vain and that much good is coming from the efforts that he inspired. They also have good cause to celebrate. Their second son, Callan, born in November 2011, is not a carrier of the genetic mutation that causes the disorder. They are convinced that “miracles” do happen.
Planning for the foundation’s 2014 events is already underway. The 2014 New York City Histio Awareness Campaign will kick-off with the 5K to Fight Histio run on Sunday, July 20, at 10 a.m. at the Hudson River Park, New York City, N.Y. Schulze and her supporters plan to be in the audience outside of “The Today Show” on July 21 from 7-9 a.m.
The Fifth Annual Liam Schulze Memorial Golf Tournament will be held at the Sand Springs Country Club in Drums the last week of September.
Schulze urges all parents to go to the foundation’s website and make themselves familiar with the HLH symptoms. Early diagnosis can help save lives. For information on Liam’s Lighthouse Foundation, go to www.liamslighthousefoundation.org.
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Michelle Slezak Schulze, second from left, is joined by fellow Misericordia University alumni Kelly Stinelli Lindenberg, whose daughter is a histio survivor, left, Jennifer Dessoye, and Alicia Rybka Richards, right, at the 5K to Fight Histio Walk/Run in New York City in July 2013. The 2014 race is scheduled for July 20.
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Liam’s Lighthouse supporters were armed with pictures of their loved ones who have been stricken with histio when they took their awareness campaign to the set of the Today Show in July 2013.
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Michelle Slezak Schulze, a native of Dupont, Pa., is shown with a picture of her son, Liam, who died from complications from histio in 2009.
Michelle Slezak Schulze established the Liam’s Lighthouse Foundation to help other families fighting histio and to make sure that her infant son, Liam, did not die in vain.
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Michelle Slezak Schulze, her husband, Chris, and their son, Liam, sport Team Liam shirts on the day of his transplant, July 30, 2009.