Joey’s Story

Joey stood at the top of the aisle, soaking it all in: every clap, every cheer, every friend, every moment. It was his graduation day at Kennedy Day School at Franciscan Children’s, a culmination of 22 years of care, education, and memories. He stood amongst the applause from the standing-room-only crowd and soaked it all in, knowing it was his time to move forward.

Born as a twin at just 28 weeks, his parents, Kathleen and Chris, were never sure if they would be able to share this moment with their son. His lungs were underdeveloped. He was incessantly sick, including a very serious bout with pneumonia. He couldn’t keep his food down. He was on a ventilator 24/7, but his lungs were so badly damaged due to his prematurity, that it did not seem like Joey was going to survive.

It was September 1997 when Joey arrived at Franciscan Children’s.  His tiny, 10-month old body was stable but still needed critical care.

“Frankly, it really wasn’t clear whether or not Joey was going to survive,” Chris said. “His lungs were just so damaged. He wasn’t able to gain any weight. Nobody was saying much more than ‘We’re going to do the best we can for him.’”

But within a couple of months at Franciscan, his condition gradually improved. He was gaining weight and working with respiratory therapists, making dramatic improvements in a short span.

“By the end of December 1997, we were feeling like Joey was telling us he was going to stick around for a while,” Chris said. In the three years Joey spent in the pulmonary rehabilitation unit at Franciscan, he kept getting stronger and stronger. He began to sit up on his own. He was smiling. He was talking and singing.

Dr. Jane O’Brien, Franciscan Children’s Chief Medical Officer, was Joey’s primary care doctor when he arrived on campus.

“Joey is a miracle,” Dr. O’Brien said. “Joey has defined, for some of us, what a miracle is because he has survived beyond amazing odds. He has thrived against amazing odds and he has developed into a happy child.”

“Joey has defined, for some of us, what a miracle is because he has survived beyond amazing odds.”

The Rices, who live in Newton, knew that the time was coming that they might be able to take Joey home for the first time.

But Joey needed a state-of-the-art portable ventilator to go home, and back in 2000, no child in Massachusetts had ever done that. Joey had fought for his life for three years. Now it was time for Kathleen and Chris to fight for him.

This brand new ventilator came with a set of obstacles. It didn’t have a classification, a history or discharge, and billing code. A lot of political red tape had to be broken down in order to bring Joey home on this new machine. So the Rices initiated a letter campaign, got vocal and started contacting local newspapers.

“We had a right to be together as a family,” Kathleen said.

Public support grew for the Rices and they reached out to Senator John Kerry who became instrumental in pushing the necessary legalities through so that Joey could finally go home. As a result, Joey was the first child in Massachusetts to go home on a portable ventilator.

Joey was home, but his Franciscan journey was just getting started. He continued to see Dr. O’Brien and his therapists on a routine basis, and he attended the now defunct medical daycare unit on campus until it was time to go to kindergarten.

The Newton public school system opened its doors to Joey from kindergarten to sixth grade. He was able to attend school with his twin brother and other children from the neighborhood, allowing Joey’s social side to emerge and grow.

But after elementary school, it became clear that the Kennedy Day School at Franciscan Children’s was where Joey could thrive.

“He continued to be medically complicated and fragile, and had a lot of special needs,” Chris said. “The Newton school district was trying to accommodate Joey at the next level, but it made sense for Joey to be at Kennedy.”

When Joey was still living at Franciscan Children’s, Kathleen and Chris would take him on walks with an adaptive chair and an oxygen tank. They would often find themselves in the Kennedy Day School (KDS), which provides fully collaborative special education, therapeutic and health services to students with significant, complex needs.

Their walks were on the weekends, though, when school was not in session.

“It was hard as parents to imagine that that was what Joey’s future was going to be,” Chris said. “We were looking at an empty hallway and it was dark and a bunch of equipment – equipment that no parent wants their kid to need.”

“Joey was really tiny and really sick,” Kathleen added. “Chris and I would go down to Kennedy and it would scare me to see these hallways because there were chairs and equipment; things that I didn’t recognize and didn’t understand.”

But it didn’t take long for the Rices to see what a truly special place KDS would be for Joey and their family.

“He was able to be so much more independent there than he was at the public schools because everything was adaptive.”

“Within the first week I think we knew it was the right decision,” Chris said. “He was able to be so much more independent there than he was at the public schools because everything was adaptive. He blossomed socially there. He got to know everybody’s name and gave people nicknames. It didn’t take long for us to know it was the right choice.”

Meaghan Melly, a teaching assistant in Joey’s classroom the last three years, has been instrumental in his recent development.

“Joe and I have a really special bond,” Meaghan said. “I don’t really know how that happened but the first time I met him, we just clicked. He has his own way of making connections and I just understand them somehow. I think that’s why we clicked to begin with. The first day I met him, I wondered, ‘Who is this kid and why is he ready to work with me?’”

Joey has always loved books since an early age and that passion remains. It serves as a way to connect with the people around him. It is also a way to keep him motivated in the classroom while serving as a continuous education tool. Dr. Seuss is among his favorites.

“It’s been really fun to watch his vocabulary just grow and grow,” Meaghan said. “Even now, people say that’s he’s 21 and they can’t believe that he’s still picking up as much as he is. A lot of the stuff that he says, he hears around the classroom and repeats it over and over in the right context.”

Franciscan Children’s has been with Joey and the Rices every step of the way. When he went home on his portable ventilator, Franciscan continued to follow his progress. All of his doctors, therapists and specialists were still located on campus.

“It’s been his safety net,” Chris said. “It’s been his social network. It was his home.”

The importance of having such a facility close to their home in Newton also didn’t go unnoticed to the Rice family.

“I don’t know how many places like Franciscan are out there,” Chris said. “It was quite literally a life-saver for us. It helped us stay together as a family. It helped us keep the glue together as a unit.”

During Joey’s graduation ceremony in the gym at Kennedy Day School before a capacity crowd, his teacher, Chris Phelon, read “Oh, the Places You’ll Go!” from his favorite author. He sang “So Long, Farewell” with his nurse. He danced with Meaghan. He made sure it was a celebration.

Kathleen then took the microphone and spoke for the family in an emotional address to the crowd which consisted of other students, teachers, doctors, nurses, therapists and administration from Franciscan Children’s.

“You all saved Joey, quite literally, at Franciscan,” she said.

“The teachers here – you saved me. You saved my family because you’ve given us respite from all of the worry and the concern. It would scare me to see these hallways because there were chairs and equipment; things that I didn’t recognize and didn’t understand. What was missing was the light. The light of you – the staff. The light of all the students and the sacred work that you do every day and you don’t even think about it. I remember back at my fears and none of it came true. What came true was your love for Joey and our love for you.”

And finally, there he stood at the top of the aisle after the ceremony. Twenty-two years of his life in front of him and behind him at the same instant. He soaked it all in: every clap, every cheer, every friend, every moment – and took the first steps of the rest of his life.