Youth's Painful Journey an Inspiration to 'Distract' Ill Kids

The pain was unbearable.

The diagnosis was rare. So rare that just one doctor knew how to perform surgery on the medical condition.

It turned into months of missed school and a lost hockey season. Not to mention the weeks and weeks of screaming in pain from the bed.

For Long Valley’s Zach Rice, the last year and-a-half has been a roller coaster if nothing else.

The 10-year-old Benedict A. Cucinella student was abruptly taken from his home in December 2011 by ambulance when he and his mother realized he couldn’t move. The athletic Long Valley Wolfpack hockey goaltender was suddenly immobile.

Traveling joint paint presented itself in the days leading up to the episode, which resulted in emergency surgery to treat what doctors called a septic hip infection. Surgery was successful and done in time to keep damage minimal in the hip.

By the summer of 2012, Rice was “back to being a normal 10-year-old,” his mom, Shannon Rice said.

Rice said it was an active summer, and by August her son had begun limping again. An appointment at the doctor’s office showed nothing, but a mother’s intuition is never wrong. Rice took her son for a second opinion, and learned the pre-teen was faced with a worst-case scenario.

Rice was diagnosed with avascular necrosis of the hip. Quite simply, the child’s hip bone was eroding, not growing, and any motion or weight affecting the joint would speed up the process.

The rounded top portion of the femur bone lodged in the hip joint was now flattening.

There was just one surgeon–doctor Michael Vitali at Columbia Presbyterian Hospital in New York–who had performed on patients with such a disorder, and would be able to install an external fixator to Rice’s hip. The fixator put three metal rods into the femur, another three into the hip, and one through the stomach to keep Rice from putting any weight on the joint.

“Medically speaking, it was the right move,” Shannon Rice said. “But for Zach, it was torture.”

It would take 45 minutes of screaming to get Zach out of bed. He was in tremendous pain, and he couldn’t help but writhe in agony on a near constant basis.

The usually active sports-lover had to eat dinner standing up, and when sitting couldn’t use a regular chair. The fixator stuck out from his body some six to eight inches, making clothes wearing difficult, and the slightest of brushes with any other object ignite a fury of pain.

“The doctors told us [the hip] would never not hurt,” Shannon Rice said. “We had to wait for him to be able to endure the pain. He was uncomfortable the entire time. It was much more difficult than we thought or expected.”

Because the condition is so rare, Rice is somewhat of an experiment. Vitali is writing a book on the condition, and Zach will likely be one of the premiere subjects in the text, his mom said.

“For all the pain and trouble this has been, at least we know someone will benefit from this,” she said.

Action for Distraction

That benefit is coming much sooner than the Rice family expected.

During one of Rice’s stints at the Goryeb Children’s Hospital in Morristown, his dad, Dan, brought in the family’s gaming system from home. While the hospital offered traveling carts of technology to keep the kids entertained, opportunities to use the devices were few and far between.

There was a lounge for young patients to use that had video game equipment, but since Rice was immobile, he had to stay in his room, in bed.

“When Dan brought in our [Play Station 3] it was a total change,” Shannon Rice said. “Not only did it give him something to do, but it distracted him from the pain. Not only was he happier, but so were the doctors and the nurses and parents.”

The external fixator was removed, finally, on March 26, 2013.

But before Zach Rice could make it that far, he knew he needed to do something to help others who had gone through his pain.

While it often takes close to a year of planning, the Rice family put their feet to the ground and drummed up support for a Family Fun Run and Walk 5K. The purpose? To raise money for gaming systems available to patients in all 36 beds at Goryeb.

And so came the berth of Action for Distraction, set to take place Saturday, April 27 at Loantaka Brook Reservation in Morristown.

Rice and her son spent the month of January going to door-to-door for sponsors, despite Zach often enduring pain to get in and out of the car and walk for stretches of time.

“Having this event, I think it gave him something to strive for,” Shannon Rice said. “For people to see him doing this, despite being in pain, proved something to them. I’m proud of him for wanting to do this and following through with it.”

An original goal of $3,400 to cover expenses was blown out of the water, as the family garnered $10,000 of sponsorships to put on the event. Just two days before the fundraiser, some 250 participants are registered, Rice said.

Sponsors have come in the way of local businesses all the way up to Sony Corporation. A mobile gaming truck will be at the 5K finish line for kids to enjoy, as well as shirts and gift bags. Members of ABC's Eyewitness News will be on hand supporting the family and participants. Everyone who finishes the event will be given a medal.

Families of all sizes are welcome to run, walk, stroll or crawl through the shaded park on Saturday, with proceeds benefiting the partnership between Action for Distraction and Kids 4 Kids at Morristown’s Health Foundation.

Cost is $25 to register before Saturday, with a $30 fee required on the day of the event. Families of four or more will cost $20 per individual. All proceeds will go directly to the purchase of gaming systems at Goryeb.

To register for the event and learn more, details can be found on the event's website.

Zach Rice returned to school on a part-time basis Monday for the first time since October 2012. While doctors are unsure of what the next year or decade may bring, for now, he’s returning to life as a 10-year-old.

He has a noticeable limp. He has an incredible story.

And now he’ll have ailing children in need of a little distraction thanking him for years to come.