MAUMEE – Phil Skeldon was living a dream – a bad dream.
A man who would spend most of his 35 years at St. John’s Jesuit High School working as the school’s Christian service director, Skeldon lost his wife, Gretchen, to breast cancer in 2010 at age 47. She had been diagnosed at age 32.
Well before she passed, Gretchen and Phil welcomed the birth of their only child, a daughter they named Lily.
“We didn’t think we could get pregnant because my wife had been through so much chemo,” Skeldon said.
Lily was 5 years old when her mother died.
Everything seemed fine with Lily at birth.
“She was basically born normal,” Skeldon said. “It wasn’t until at six or seven months that she started to have these infantile spasms. They are very subtle, and she contracts like she’s almost bowing. That turned into a seizure disorder, which she’s had her whole life.
“In terms of symptoms, if you saw her you would say she has muscular dystrophy. She has struggles walking and is cognitively delayed. She is vocal, but non-verbal.”
Lily was fully diagnosed with tubulinopathy at age 15.
Tubulinopathy is a spectrum of genetic neurological disorders caused by mutations in the genes that encode tubulin, the building blocks of microtubules. These structural proteins are critical for brain development.
“Most people who have her syndrome…it didn’t come from my side of the family or her mom’s side,” Skeldon said. “It happens at conception.”
Needless to say, working a full-time job and caring for a child with a disability eventually became overwhelming for Skeldon, who is now 63 and retired.
“My wife had sisters and a brother,” he said. “I had 11 siblings and [Gretchen] had many cousins and many friends. There was no problem taking care of Lily.
“After about six years of raising her by myself and working full time, I just couldn’t do it anymore.”
Skeldon’s job at St. John’s Jesuit required him to “place students out into the community, including Sunshine, for community service.”
Sunshine Communities, a Maumee-based nonprofit supporting people with developmental disabilities in northwest Ohio, was founded in 1950. Sunshine focuses on “creating opportunities for connection, independence and community for individuals with developmental disabilities.”
Skeldon said, “I sent [SJJ] students there for years, not knowing I would ever need Sunshine.”
He said work “became my refuge” after years of caring for Lily, who would typically have seizures nearly every night.
“I had to have a video and audio monitor at my bedside,” Skeldon said.
He reached out for help from Sunshine Communities, which contacted him when Lily was 11. Skeldon now says Sunshine has been “a godsend.”
On April 27, a documentary called All Access with Andy Garcia featured Sunshine Communities. The eight–minute documentary was hosted by actor Andy Garcia and will air nationally across major cable news networks including CNN, Fox News, CNBC and more.
All Access highlights innovation, leadership and social change and includes perspectives from organizational leadership on the developmental disabilities sector as a whole and how Sunshine continues to meet the evolving needs of the community.
Phil and Lily, now 22, are featured in the documentary along with Michael Ann Feldkircher, who has lived at Sunshine since childhood. The video focuses on her growth, independence and participation in Sunshine Studios.
The heartwarming video can seen on Sunshine.org and the All Access website.
The role of philanthropy
Shannon Bova has worked for Sunshine for nearly a decade, including the last five years as chief philanthropy officer. She said the All Access production team reached out to Sunshine for a potential feature.
“They found out about our services and wanted to highlight the health and human service field,” said Bova, who is interviewed in the All Access segment. “They came across our information and reached out to us to see if we wanted to share our mission and the work we do.
“We were humbled by the opportunity. It was a really neat opportunity to be seen nationally across the country.”
In addition to staff, Sunshine had 2,500 volunteers as of 2025, according to Bova.
Sunshine’s base facility, which has a capacity to house 59 people, is located in Maumee. Sunshine also has 10 group homes in the northwest Ohio community.
Lily now lives in of those group homes.
“That’s her home,” Skeldon said. “Initially, her first year she spent at the base facility; then they moved her into a group home. I really like the group homes. Early on she did not like it when I left, but now it’s become her home.”
Interacting with the community
Bova said her team at Sunshine interacts with the community in many ways, such as volunteering engagements with donors, special events, and the media.
“We haven’t been able to do this for 77 years without the support of our community, whether through volunteer hours, connection visits, helping with our grounds, and weekend or friendship visits,” Bova said. “We raise between $1 million and $2 million every year for very important needs here that we don’t receive through the government funding through Medicare.
“We are 99 percent Medicare funded, and our donors help fill in that gap.”
Being around other people
In the All Access video, Skeldon points out that most children with disabilities want to be around other people.
“They want to experience life,” he said. “Sunshine allows that for me and my daughter to happen. I would say to other parents, don’t cut your child short. Know that they want to be like their typical peers and they want to engage in life. That’s what I’ve done for my daughter with Sunshine.
“I am a better dad because of Sunshine and the life they have given my daughter.”
For more information visit sunshine.org.
