Saturday, June 23, 2012

Teaming Up for Impact

Courageous MGHfC kids join local college sports teams for the love of the game.

The newest member of the Mass Maritime Academy lacrosse team sits on the edge of his seat, bursting with excitement about the last season. His eyes light up as he exclaims he wants to play 100 more seasons with the Buccaneers. He shares his plans to “hang with the guys” over the summer and raves about the day he was drafted to the team.

Teddy and his team bring it in. Photo credit: Christine Hochkeppel/Cape Cod Times.

He also patiently waits as his mom feeds him nutrition through a central line in his chest. Teddy McGowan, 12, has lived with mitochondrial disease for nine years, but that doesn’t stop him from suiting up as a passionate honorary member of the Buccaneers.

McGowan signed onto the lacrosse team this spring with the help of Team IMPACT, a Boston-based non-profit that connects kids battling life-limiting health issues with college sports teams across the northeast. Ever since the program partnered with MassGeneral Hospital for Children (MGHfC) last November, Team IMPACT has matched nearly 25 children who have at one point been treated at the hospital, and hopes to reach more.

“These kids have been prohibited from participating in organized activities, and sometimes they face challenges with confidence to develop friends,” says Dan Walsh, executive director of Team IMPACT. “This program gives them the huge social and psychological boost they’ve missed out on from extended hospital stays and various treatments.”

Teddy’s complicated condition brings him from his home in Sandwich to MGHfC every other Thursday, says his mother, Becca McGowan. Mitochondrial disease is a result of the body’s mitochondrial cells failing to produce energy the body needs to function and grow. As Teddy’s total parenteral nutrition (TPN) device beeps, Becca explains how Teddy lacks energy, has seizures, doesn’t eat much and has had his colon removed.  

Teddy tries on his new Mass Maritime Academy lacrosse helmet. Photo credit: Christine Hochkeppel/Cape Cod Times.

When MGHfC outpatient pediatric social worker Shellie Legere, MSW, MBA, LISCW, suggested Teddy would be a great fit for Team IMPACT, the McGowans had no idea what to expect. Little did they know that on “draft day,” the introductory event that Team IMPACT hosts for each participant, Teddy would walk into the Mass Maritime Academy gym packed with student athletes in full uniform cheering for him, receive his own jersey, helmet, and locker, and initiate a bond with his fellow teammates that he hopes will last for many seasons to come.

“On draft day, the kids are treated like rock stars,” Legere says. “It’s a huge production, and it’s a unique way for the kids and teams to begin a reciprocal relationship. These kids struggle with school, they sit at home, and their medical situation just rocks their world. Team IMPACT is a new and happy resource for kids and their families to have a meaningful, therapeutic experience.”

“Draft day is a time when the family shares their child’s medical journey, and that’s where the magic starts to happen.” Walsh says. “The student athletes get a healthy dose of perspective beyond just being a compassionate teammate on the field.”

Celia is a proud member of the Springfield College softball team.

At a smaller, quieter draft day in a Springfield College conference room, Celia LaBarbera, 8, clings one arm to her mom and the other to her teddy bear, “B.” Anita LaBarbera addressed the women’s softball team, sharing the story of how her daughter was diagnosed with neurofibromatosis type 2 (NF2), a rare genetic disorder that affects the central nervous system. When Celia was just 8 months old, she endured reconstructive cranial surgery after doctors found that her brain wasn’t developing properly. After the procedure, Anita says the family held a major celebration and thought their baby’s struggles were over. But Celia’s tiny body continued to turn against her over the years, eventually leading doctors to discover constellations of tumors scattered across her brain and spinal column.

“When the girls heard Celia’s story, they didn’t ask any more questions,” Walsh says. “They instinctively kicked into high gear and wanted to help her in any way they could.”

Celia’s condition means she tolerates pain on a daily basis, sometimes so severe that her mom carries her to ease the ache of walking. Other times, the hurting keeps Celia up at night. But on draft day, her pain surrendered to smiles. Within minutes, both Mom and B were left behind, and the once shy Celia was holding hands with her new teammates and learning the team cheer.  

“It was like Celia got 18 big sisters,” Anita says. “Every time I looked, she was in someone else’s arms and doing secret handshakes. She said to me, ‘They love me!’ And I told her, ‘Yes they do, Celia.’”

Celia bonded quickly with one teammate in particular, the senior third baseman Tess Gagliano, who won Celia over by juggling tennis balls and playing catch when they first met. Although Gagliano only had one year on the team with Celia, she says she keeps in touch and plans to see Celia when she returns to Springfield College for graduate school in the fall.

“There was one time when I was having a rough day and wasn’t playing well,” Gagliano says. “Celia came running over to me, gave me her teddy bear and said, ‘He makes me feel better, so he can make you feel better.’ Seeing how positive she is with her life puts a whole new perspective on mine.”

Like other Team IMPACT kids, Celia doesn’t play during games, but she attends practices when she can and roots for her teammates in the dugout. The Wilbraham native made it to almost every home game except for one, which she missed because she needed yet another surgery (she has had 17 surgeries to date). As Anita was driving Celia into Boston, her cell phone was ringing off the hook with calls from the team.

“Celia understands that she has medical problems, but now she’s learning that there are people outside of this little family that care about kids like her,” Anita says. “It lets her know that she’s special.”

Celia LaBarbera

Celia plans to play with her team again next season.

Team IMPACT’s top priority is identifying more children who, as a result of extended medical treatment, can benefit from the social and psychological boost that comes from being an integral member of a team. The program’s involvement with MGHfC through the Coordinated Care Clinic has blossomed since November, when Associate Chief Nurse Debra Burke, RN, MSN, MBA, invited the program’s founder, Jay Calnan, and his board members to meet with a group of child life specialists and social workers. Within the first week of the partnership, five children were already identified as potential recruits.

“After meeting with Team IMPACT’s leadership and researching their website, I felt convinced that we had to be able to offer this program because it has so many benefits for the kids and their families,” Burke says. “At a recent event, a Brown University hockey player spoke about his involvement with Team IMPACT, and you could just feel how committed he was to this young boy who was now part of his team. The impact of this program is also significant for these college athletes.”

Shellie Legere spearheads the relationship between Team IMPACT and MGHfC, and now participates on the program’s advisory board to assist them on ways they can grow in their partnership.

“We’re matching dozens of kids each month and have capacity to benefit even more of these courageous kids in a really powerful way,” Walsh says. “There is no direct expense for the child or the team, and the response from the athletic community has been incredible. Once one team drafts a child, every other team on campus wants one.”

“I thank MGHfC for just thinking of us because Celia really, really needed this,” Anita says. “She went through a time of being very shy, but she has come out of her little shell. She’s smashed it to smithereens.”

See a video of Celia's Draft Day here, produced by Springfield College.


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