Friday, August 17, 2018
By: Jessica Hardin
Dan and Meghan Houck operate a one-patient hospital out of their living room.
Their son, Ryan, 4, was born with Miller-Dieker Syndrome, a rare genetic disorder marked by seizures and developmental delays.
As a result, they’ve been trained in the use of a nebulizer, a deep suction machine and other medical devices. Thanks to support from the Akron Pediatric Palliative Care Program, the Houcks manage their son Ryan’s care from the comfort of their home, thus minimizing hospital stays.
“In his first six months, I spent so much time on the phone calling doctors instead of [being] with him,” Meghan said.
The Palliative Care Program at Akron Children’s Hospital has dramatically changed the lives of Meghan, Dan and their other son, Grayson.
“We both have full-time jobs,” she added, “Now that Ryan has a little brother, it’s so helpful to have that family unit here.”
Pediatric palliative care provides support to families with children who have serious or complex medical issues. In a case like Ryan’s, the program involves a lot of moving parts.
“Ryan has so many specialty doctors. It’s a puzzle, but they put it together,” Dan explained.
However, many families who could benefit from the program are reluctant to seek support.
“If you mention palliative care, there is a stigma. People think of it as end-of-life care,” Meghan said.
When Ryan was about 6 months old, Meghan discovered palliative care through social media.
Initially, participation in the program required frequent drives to Akron. In recent years, the program’s Mahoning Valley program has grown substantially, thanks to Meritage of Miracles, the nonprofit organization founded by Michelle Sergi of Lowellville.
Sergi is a medical student at Ohio University and was inspired to start Meritage of Miracles by her experience volunteering at Akron Children’s Palliative Care Program.
“Families from Youngstown spoke to me about the burden of traveling to Akron when their child was ill. I needed to see if Akron Children’s would be willing to expand the program,” she said.
Sergi’s fifth annual fundraiser for the Mahoning Valley Pediatric Palliative Care Program will take place Sunday at 3 p.m. at Stambaugh Auditorium. The event will feature a silent auction, wine from L’uva Bella and craft beer from Birdfish Brewery.
“One hundred percent of the proceeds go to the Mahoning Valley Pediatric Palliative Care Program,” Meghan said.
The Houck family got involved in Meritage of Miracles when Sergi invited them to share Ryan’s story at the nonprofit’s 2016 event.
“It was kind of scary. We were still in the grieving process,” Meghan explained. “But we found that we were helping by sharing our story. When we got the diagnosis, we wanted to hear other families’ stories.”
For the Houck family, the Mahoning Valley Pediatric Palliative Care Program has not only simplified Ryan’s care – it has prolonged his life.
“When he was diagnosed, we were told that he wouldn’t live past 2. He’s 41/2, and he is here because of palliative care,” Meghan said.