For Connecticut Children’s child-life specialists, the “trick” is making a child’s visit to the hospital a treat. And when it comes to Halloween, they get help from the experts: Spirit Halloween stores. Throughout the Halloween season, participating stores in Connecticut conduct in-store fundraising in support of Connecticut Children’s to help the Division of Child and Family Support Services. And their support helps make hospitals less scary for children like Nevaeh Roy.
Nevaeh, who is 6, has been a patient at Connecticut Children’s since she was born and is followed by a half-dozen specialists. “When I was pregnant with her, the ultrasounds showed she was a big baby, and her tongue was always sticking out,” says her mother, Kristin. “We knew she had an umbilical cord problem and that she would need help. We just didn’t put it all together.”
The “it” was Beckwith Wiedemann syndrome, a rare genetic disorder in which growth hormones are out of balance. The hormone that regulates muscle growth is missing, and children with the syndrome grow much faster than most children. Enlarged tongues are a frequent feature, as are intestinal issues.
In Nevaeh’s case, her tongue was so big, she couldn’t eat properly or breathe (at night, her breathing stopped 60 times a minute). Connecticut Children’s surgeons reduced her tongue size five weeks after birth and then, when her tongue became enlarged again, they performed a second reduction surgery a few months later.
Among the many specialists who have treated Nevaeh are those from pulmonary medicine, speech therapy, neurosurgery, the Center for Cancer & Blood Disorders (the syndrome increases the risk of cancer), ENT, physical therapy and cranio-facial. She’s been seen in the Emergency Department more than 10 times.
A Success Story
Today, Nevaeh is doing well. She’s eating and breathing without a problem. She dances and does gymnastics. She entered kindergarten in September, and she’s big and strong for her age: “I buy her clothes from the 11- and 12-year-olds’ section,” Kristin says. But she won’t always be bigger than her classmates; typically, growth rates level off in patients with Beckwith syndrome as they near adulthood and as other kids catch up.
With all the medical care she’s received, Nevaeh might be expected to find the hospital a scary place, but she doesn’t. In fact, says her mother, she gets excited as soon as the car takes the highway ramp into Hartford. “She’ll shout, ‘That’s where my doctors are!’” Kristin says.
And that’s due, in part, to the child-life specialists who work with her and other patients at Connecticut Children’s. Their job is to ease anxiety, remove fear and inject fun into each procedure and every visit. They have specialized training and a wide range of techniques and tools to do that job. And thanks to Spirit Halloween, they have extra support. Since 2007, Spirit Halloween stores around the country have donated $55 million to children’s hospitals through their Spirit of Children campaign.
A Frightfully Good Time
It isn’t just money, though. On October 15, Spirit Halloween sponsored a Halloween party for patients and their families at Connecticut Children’s Family Resource Center. More than 200 children and parents took advantage of mask painting, face painting and more than 250 costumes, all donated by Spirit Halloween.
In addition, Valentine the Clown painted kids’ faces, Chuck E. Cheese stopped by and Miss Connecticut, Jillian Duffy—herself a former Connecticut Children’s patient—spread her special brand of inspiration and hope. Nevaeh and her mom were among the happy participants.
“So far, we’ve donated $194,000 to Connecticut Children’s,” said Spirit Halloween –District Sales Manager Jamie Murphy, sporting a zombie costume and impressive makeup. “We do this so the hospital will be less scary for kids.”
Throughout the year, Connecticut Children’s partners with a variety of retail businesses that support our work through their sales. To learn about current offers, or how your business can get involved, visit our Shop to Give page.