The loss of a loved one is heartbreaking, but the loss of a child is indescribable. “It is a wound on your heart that never heals,” says Lee Neff. Many families of Riley Hospital for Children at IU Health know that sentiment too well, and Lee’s family is just one. As a result, Riley leaves a lasting mark but one that leads to truly remarkable volunteers like Lee.
Philip Edwin Neff died September 8, 1993—a day etched into her family’s fabricate. Back in 1990, though, a visit to Riley at IU Health was just the first of many Lee would make over the next 26 years. Philip was diagnosed with a rare inherited neurometabolic disorder called Leigh’s disease. With no known cure, which typically emerges in infancy and is characterized by the progressive loss of mental and motor abilities, Philip died just short of his fourth birthday.
Although devastated and grieving, Lee was determined for Philip’s life not to have been in vain. One way for her to live her life in his memory was to give back to those who gave so much to her family; Riley was the reason Philip’s life, and her time with him, was filled with joy.
In the 90’s, there were not many volunteer opportunities at Riley, so she started with office work for the Riley Memorial Association (predecessor of Riley Children’s Foundation). But her heart remained at the hospital. Then, in 2008, she worked with the foundation to form the women’s philanthropic group, Women for Riley. Since then, Lee has held a variety of positions in Women for Riley (including President), shaped the group’s growing volunteer program (with over 40 volunteers), launched the Women for Riley grants program (which has awarded over $600,000 in grants) and helped start the Riley Cancer Center Prom.
“Lee found the inner determination to honor Philip by setting out on a course of volunteerism and community leadership that has provided hope for countless Indiana children and families,” said Jeff Sperring, CEO of Seattle Children’s and former President of Riley at IU Health. “She makes everyone around her better…she certainly made me better.”
Outside of Women for Riley, Lee spends her Wednesdays in the Child Life Zone, playing with patients, lending an ear to concerned and saddened parents and sharing the same compassion the team at Riley offered her family over 20 years ago.
The hours she dedicates to Riley alone nearly amount to a full-time job, but she insists there is no other way she would rather devote her time. “Riley has become my home and people here my family. A piece of Philip lives on at Riley, so every day I am here, I am with him.”
“Parents say it is a remarkable thing to, in a moment, feel immense pride for their children; this time, the roles are reversed”, says Lee’s children. “As Lee’s children, we are privileged, and grateful to Philip, to nominate her for this year’s Health Care Heroes.”
-- By Alexandra Neff