Malik’s mom Chevonne knew there was an issue with her son’s digestive track soon after he was born in a New York hospital. She realized she hadn’t needed to change his diaper yet.
“They were going to try to discharge him and I said, ‘Something isn’t right. I haven’t had to change him since he’s been born.” So they immediately started doing testing and that’s how he was diagnosed with Hirschsprung’s Disease,” she said. “He had a pull-through surgery at like 3-4 days old and was in the NICU. I didn’t get him home until almost a month old. For my first child, it was a lot to endure, and I didn’t understand the journey that lay ahead.”
Since then, local doctors helped with the symptoms but couldn’t make progress on Malik’s bowel troubles.
Through research, Malik’s grandmother found Nationwide Children’s Hospital stands at the forefront of treatment for this very rare disease. After 18 months of insurance hurdles and delays, Chevonne was finally able to book Malik an appointment at the Columbus hospital. And when the question came up as to where to stay, they immediately decided on the Ronald McDonald House.
In New York, Chevonne and Malik’s father had tried to sleep in the waiting room for three nights when their son was in the NICU. This ended up costing Malik’s dad.
“He lost his job for falling asleep at work. It was rough,” Chevonne said. Once they discovered the local Ronald McDonald House in New York, things changed. “At the House, they provided everything. All I had to do was worry about my son,” she said.
Experience at RMHC of Central Ohio
Although the family had stayed at a Ronald McDonald House before, the Columbus location offered a different experience.
“I was pleasantly surprised,” said Chevonne. “It’s beautiful here. I can tell a lot of love was put into this place, and the staff present that as well.”
She pointed out a special detail in their room’s bathroom – a hook for a flush bag – that made all the difference in the world.
“There’s a hook in the bathroom and for someone who needs to use a gravity bag and as someone who has had to use them for years, I’m always looking for where to hang this thing no matter where I am. Even in my own bathroom, it’s like I need to hang it high enough and close enough. I remember the first time I saw a hook was right next to the toilet, I almost cried.”
Community at the House
Chevonne also said she enjoyed meeting another family staying in the House from Jamaica whose ten-year-old son had the same disease. Malik made a new friend the same age with the same rare disease. Chevonne shared that’s one of the reasons the Columbus Ronald McDonald House does more than provide a room and meals during a stay: it creates connections with families on similar medical journeys.
The House has provided Malik and his parents with shelter and emotional support for three different visits that each lasted at least a week.
“It’s not like staying in a hotel; you feel like family here,” Malik’s mom reflects. The warmth from staff and volunteers helped Malik feel a sense of normalcy, allowing him to enjoy time playing and making friends.
From meals provided by volunteers to thoughtful direction from staff, the supportive community at the House made all the difference. Chevonne remembers one time when the environmental services (housekeeping) technician, whom she had never met, pulled her aside in the dining room to let her know when some new donations with items her family needed were being delivered.
As Malik prepares for a procedure that offers more independence, his mom feels hopeful. “The doctors are giving us hope,” she says, smiling at Malik’s bright future.
The Ronald McDonald House has been a critical part of their journey. “It’s a sanctuary during tough times,” she expresses her heartfelt gratitude. “To everyone who supports the House, thank you for making a difference in our lives.”
