Making Life Brighter for Riley Patients: One Volunteer Shares Her Inspiring Story

Blog Leeneff

For dedicated volunteer Lee Neff, her years of service at Riley Hospital for Children at Indiana University Health is a way to return the support the staff gave her and her family years ago.

When Lee Neff first came to Riley Hospital for Children in 1990, it was under sad circumstances. Her son, Philip, was diagnosed with a rare inherited neurometabolic disorder called Leigh’s disease, an unfortunate name that Neff could barely bring herself to say. “I would pronounce it ‘Lay’s’ disease,” she recalls. There is no cure for the disorder, which typically emerges in infancy and is characterized by the progressive loss of mental and motor abilities. Patients usually only live for two or three years. Philip was just under a year old when he was diagnosed.

It was a devastating time, but Neff was comforted by the compassionate care that Philip received at Riley. His doctor was the late Rebecca Wappner, MD, an esteemed expert in metabolic disorders like Leigh’s disease. “She was able to treat Philip’s symptoms and extend his life, and that was a true gift,” says Neff. The support Dr. Wappner provided to the whole family was also invaluable. Neff recalls one Sunday morning when Dr. Wappner came to visit them at Riley after Philip had been admitted the night before for seizures. “I don’t even think she had to be there that day, but she sat and talked with us and made sure Philip was recovering,” she says. “After she left, someone asked me if she was my mother. That’s how caring she was.”

Sadly, Philip passed away shortly before his fourth birthday. The family grieved, but Neff says they were also motivated to find ways to remember him. “We wanted Philip to remain part of the family even though he wasn’t with us,” says Neff.

Volunteering at Riley seemed like the perfect way for Neff to both honor Philip and give back. But at the time, there weren’t many opportunities. Neff did office work for the Riley Memorial Association (the predecessor of the Riley Children’s Foundation), which handled wills and bequests, but what she really wanted to do was work in the hospital. Then, in 2008, members of the Riley Children’s Foundation came to her to discuss forming a women’s philanthropic group at Riley. “I was so thrilled that I immediately told them I wanted to be a part of it,” she says.

Shortly thereafter, Women for Riley was born. As one of the first members, Neff had the opportunity to help shape the group’s direction, and she made it a priority to create an in-hospital volunteer program. She partnered with the Child Life Program, which provides therapeutic services to kids at Riley, to allow volunteers to participate. Now, Women for Riley members come to the hospital twice a month to provide activities such as art projects for the children. So far, 40 members have been trained to take part—Neff included, of course. She’s also deeply involved with events such as the annual Riley Cancer Center Prom, where young patients and their families dress up for a night of dancing and fun. (Neff and her fellow volunteers have also created a pre-prom spa day and “Promingdales,” in which kids choose their party outfits from donated gowns and tuxedos.) “The hospital is where my heart is,” she says. “I can relate to the children and their families, and I hope to offer them some of the care and compassion my family received at Riley.”

Neff has held a variety of positions in Women for Riley over the years (including a term as president from 2013 to 2014) and is one of the most devoted participants. The hours she spends at Riley nearly amount to a full-time job, but she wouldn’t have it any other way.

“The leadership and staff at Riley have really embraced me,” Neff says. “They know my story and they treat me in a way that respects what I’ve been through. I will always be a volunteer there.”

-- By Jessica Brown

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