Thanks to the Ronald McDonald Family Room, AJ and Twinkie found a retreat during their stressful time at the hospital.
When AJ and his wife, Twinkie, welcomed their son Nietzsche into the world in April 2022, their happy news was soon followed by worry and concern. Nietzsche was diagnosed with a rare condition known as biliary atresia, and would need a liver transplant within the first 18 months of his life.
Suddenly the new parents were facing challenges and fears they had never expected. Nietzsche’s fate hinged on finding a suitable donor, but luckily AJ’s brother qualified and agreed to undergo the procedure to save his new nephew’s life. “It was a full on family affair,” says AJ, about the invasive operation in which both his son and his brother were the patients.
Nietzsche was admitted to SickKids hospital in December of 2022 to ensure that his health and strength were optimal before the transplant scheduled two months later. But he ended up staying for four months, until just before his first birthday in April.
“February was a tough month,” says AJ. “Nietzsche had a rough road after his transplant, and needed a couple more surgeries. We didn’t have the smoothest journey.”
Although the family live close to the hospital, Twinkie never left Nietzsche’s side – sleeping in a cot beside him at night and never getting a break from the constant stress of the hospital environment… until the family discovered the Ronald McDonald Family Room.
“We didn’t know about it initially,” says Twinkie. “But once we did, I would be there at least three times a day or more. I slept there. I escaped there. I got to read and write and be myself there. It was a slice of heaven in such a stressful environment. I felt a little bit better each time I walked into the Family Room. I am so grateful a place like this exists within the hospital grounds.”
“There’s so much stuff going on, so much stress that you’re dealing with,” adds AJ. “The Family Room is a little retreat; an escape. Sometimes you do nothing, just watch a TV show or eat a little, but you’re just out of the environment of doctors and beeps and machines. Those little things add up when you’re so stressed out.”
Although the family have had a lot of bumps in the road, AJ and Twinkie are happy to report that Nietzsche is currently in good health, and that AJ’s brother – who had a hard couple of months after the surgery, and has three kids of his own – is also doing well.
“If there was no Family Room, my wife would have been more stressed. Another one of the other benefits was that we got to meet other people going through similar stuff at the same time. The hospital experience is so contradictory. On the one hand, your baby is always being woken up and prodded; frightened. For parents, it’s exhausting. But the best doctors are there. It’s necessary for his recovery. We’re just grateful we found a peaceful space to help us get through it all.”AJ, Nietzsche’s dad
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