Jamie Cary, a certified child life specialist in Upstate’s Pediatric Pulmonary and Cystic Fibrosis Center, learned of a memory-making quilt project at a conference. When she returned to Syracuse, she approached her supervisor, Margaret Nellis with the idea of doing something similar for the families of her patients.
Moments after Cary left her office, Nellis got a phone call. The Towpath Quilt Guild, in Fayetteville, was looking for do a service project.
“When something comes together this easily, you just go with it,” Cary says. “Everything just fell into place.”
The Child Life Program provided fabric markers and 10 blank 10-inch quilt squares for each participating family. The families were to decorate the squares and return them at their next doctor’s appointment. Then guild members used the squares to assemble more than 40 quilts for participating families, plus a few extra with blank squares for future families.
Each was as unique and personal as the family it represented.
The Green family of Helena, in St. Lawrence County, completed the squares during a family trip to Disney World. Madison, 7, requires nebulizer treatments twice a day. So she and her siblings and cousins completed the squares while she was doing her treatments. Madison’s youngest sister was just a year old, so her square is mostly scribbles.
Carey Green describes her daughter, Madison as energetic. “CF doesn’t slow her down. She plays softball. She did dance. She wants to join figure skating. She does all the stuff your typical first grade little girl likes to do.”
Madison was born with a bowel obstruction that required surgery. That’s when doctors discovered she had cystic fibrosis. Her treatment – which involves medications, nebulizers and a vest that helps loosen the mucus in her airways – has become a way of life for the Green family. “We’ve all come to accept it, and we’ve all just kind of adjusted to it,” the mother says.
Green appreciates the quilt, which commemorates a special family vacation.
Other quilts featured favorite sports teams or video games. On some, children traced their hands and feet. Another had supportive quotes, written by each family member.
“There was such an array of things that were drawn or put on them,” recalls Cary, the child life specialist.
She provided the guild with the gender of the child, and the child’s favorite color. And she was blown away with the personalization of each quilt. “Look at any of the quilts,” she says, “and you would have thought they had sat and talked with that child for an hour. They really captured that child. Not to mention, the craftsmanship is beautiful.”