Embracing the Beauty of Life – Challenges and All

When Nick Fioravanti was diagnosed with cerebral palsy before his first birthday, his parents, Julie and Alex, decided he would live as full and joyful a life as possible.

To reach that goal, they have knocked down one roadblock after another.

Nick is 28 now, and he has been living “an amazing life” even though he has limited mobility in his arms and legs and requires daily help with dressing and bathing. He communicated non-verbally until he was almost 14, but with coaching from his family — especially his sister, Stephanie, and brother, Matthew — he began speaking in short sentences.

Nick Fioravanti with his family.

While outsiders might have seen insurmountable challenges, Nick and his family have always focused on what he can do, not what he can’t. And it turns out, he can do a lot.

“If the other two kids went sledding, Nick would go,” Julie said. “I figured out ways to make things adaptable: ice skating, rock climbing, swimming, kayaking.”

While at Penfield High School, Nick had a job delivering mail to faculty, and he now attends a daytime rehabilitation facility, which he calls “going to work.”

Every turn of Nick’s life has involved seeing a challenge and meeting it head-on. So when it came time for Nick to transition out of pediatric care, Julie was ready for another roadblock. And at first, that’s what she found. Many traditional medical practices aren’t designed for her son’s physical or medical needs.

“Nick is in a wheelchair, and just getting into some of the medical practices we visited proved to be a daunting task. At one place, they asked Nick to get on a traditional scale so they could get his weight — not taking into account that Nick can’t even stand up on his own.”

Their journey brought them to the Complex Care Center. It immediately felt like a turn for the better.

“When we walked in for the first time, we saw the wide doors and halls, a wheelchair scale for patients, the lab right there. This was the place for us.”

Their first meeting with Tiffany Pulcino, M.D., M.P.H., was also reassuring.

“Dr. Pulcino told us, ‘I know a lot of special needs parents have been fighting a hard fight for their child for so many years. I want to let parents be parents, so we will fight for you — you can take off your boxing gloves now.”

With the Complex Care Center in their corner, things initially went smoothly for Nick and his family, but soon they would meet another roadblock. The biggest yet: a diagnosis of stage 3 testicular cancer.

The Complex Care Center team was ready to help Nick and his family. Throughout Nick’s chemotherapy, team members at the hospital would check on him and update his family. The treatment took a toll; Nick is 6’ 1” and his weight dropped from 135 to 99 pounds. All the verbal ability he had gained was lost. “He had an amazing life before the cancer came and stole all that away,” Julie said. “The journey back from cancer has been really difficult.” Fortunately, Nick’s health is back on track; at his last check-up in September 2019, he was 12 pounds heavier than his pre-cancer weight and was feeling well. He’s regained his speech ”and it’s now coming back with a vengeance,” Julie joked. “He’s getting quite bossy!” While Nick had been going to work three days a week, lately he’s been asking to go every day.

Julie believes access to outpatient care that diagnosed the cancer quickly made all the difference. “If we hadn’t found Dr. Pulcino as his physician, I don’t think the testicular cancer would have been caught when it was or taken as seriously as it was. I think he is alive today because she listens to us so carefully and gets on things right away.”

For families that face challenges like hers, Julie has advice for navigating tough times.

“Remember that we are all disabled in some way, shape or form. Everyone has something different from other people. Parents like us are 28 years into this journey; for the ones who are just starting out and thinking, ‘This is the end of my life as I know it’ — I say, yes, but it’s the beginning of a journey you don’t even know yet. Allow yourself to grieve the life you thought you were going to have, but also be open to embracing the beautiful and wonderful experiences that come along with parenting a child with special needs. At the end of the day, the benefits far outweigh the alternative, and that would be them not being with you at all.”