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When young Teddy Ram stopped developing like other kids, his parents began to worry. When an abnormal MRI pointed to mitochondrial disease, they were devastated. Residents of Long Island, they scoured the country for answers to this rare, incurable genetic disorder.
Akron Children’s Hospital is one of only four medical centers in the nation designing and running clinical trials in mitochondrial disease. Teddy’s parents had found their ray of hope.
The first thing they needed was a place to stay. In the early days of the trial, Teddy and a parent had to drive into Akron for treatment several times each month. That meant they stayed one or two nights after a long night’s driving before packing up and heading back to New York.
“We looked into Ronald McDonald House because of its reputation and sure enough, it was within a block of Akron’s Children’s Hospital,” remembers Thomas. “From the first minute we called, it was wonderful.”
For Teddy, the House is his home away from home. He loves the meals and snacks, as well as the choice of local Akron restaurants. After a day of tests and treatment, he likes kicking back, watching videos and hanging out with his dad in the comfy communal living spaces.
“You’re not isolated like in a hotel room,” says Thomas. “It’s like being in your own house. You have a TV, a game room downstairs. We mix right in with the people who are staying here longer. You eat dinner and lunch with them, and you end up talking about their kids’ conditions and sharing your trials and tribulations. That’s very helpful.”
Meanwhile, his clinical trial goes on. His visits are less frequent now. He comes into Akron every three months as his clinical team continues their search for a cure. Best of all, his disease is no longer progressing, giving his parents new hope for his future.