PITTSBURGH — Katelyn Pownall wasn’t sure her 3-year-old son would ever meet Santa Claus.
Nash was born with Menkes disease, a rare genetic disorder that disrupts the body’s ability to absorb and distribute copper. This causes severe damage to the nervous system, as well as connective tissue abnormalities in the skin, joints, and bones.
Menkes is terminal, and since May, Nash has lived at the Children’s Home of Pittsburgh, Pownall told Spotlight PA. The hospital provides specialized pediatric care to medically fragile children.
“We just count our moments, not our days,” Pownall said.
Earlier this month, Pownall and Nash relished a magical moment: They met both Santa and Mrs. Claus at the hospital.
Against a paper recreation of a brick fireplace, the Yuletide couple cuddled patients, gave high fives, and handed out gifts. For Nash, the Clauses sang a short rendition of “Jingle Bells.” And he got a stuffed cat and a copy of Where the Wild Things Are that were donated by a church.
Perhaps most importantly, Pownall got a picture of her son with Santa to commemorate this milestone.
Nash is nonverbal, but Pownall said he loves interacting with people, and that she could tell by his face and body movements that he enjoyed his festive guests.
“Santa just looks at Nash like another kid,” Pownall said, “and that’s very important.”
Though the Children’s Home works to create a warm atmosphere through activities like circle time, seasonal decorations, and lots of toys, life in a hospital can be harrowing. Kids are surrounded by unfamiliar smells and sounds. Strangers poke them with needles, and lead them through breathing treatments and physical therapy.
December can be especially tough because families want to be home and together for the holidays, said Danielle Church, a child development specialist at the hospital who works with kids like Nash.
A visit from Santa can help them push through the grief of a less than ideal Christmas.
“He’s going through the hallways jingling his bells, and it brings this sense of magic to the families,” Church said.
The Santa and Mrs. Claus who visited Nash drove their red Jeep down from a suburb of Buffalo, New York.
“I help Santa. Santa can’t be everywhere at once,” said Brian Horwood, whose velvet suit includes a golden key and matching belt buckle.
Horwood’s wife Julie, or Mrs. Claus, is even more bejeweled, her costume adorned with rhinestones and pearls. Their holiday flair helps conjure a sense of magic for kids, they said, especially those who might be questioning Santa’s validity.
The Horwoods started pinch-hitting for Father and Mother Christmas about five years ago. Julie Horwood was having a rough day when she saw a Santa riding a motorcycle.
“That just brought me so much joy. So I called [Brian] up and said, ‘We’re doing this,’” she said.
The Horwoods said they direct money they receive to a charitable cause. This year they’re raising funds to support the work of a surviving mother who donates money to strangers.
The woman, Christina Boyd of Erie County, New York, leaves notes with money in stores and other public places. The notes explain that the random act of kindness honors the memory of her son Ollie, who died before his second birthday.
There are more than 980,000 children in the U.S. with complex medical problems that limit their life expectancy, according to an analysis by the Pediatric End-of-Life Care Group at the University of Tennessee, Knoxville. The researchers used data from the 2019-2020 National Survey of Children’s Health, a federally funded report. The group found that more than 37,900 of these kids live in Pennsylvania.
Being a Santa for critically ill kids is a big responsibility, said Chris Dufort, aka Pittsburgh Santa.
When Dufort becomes his jolly alter ego and visits UPMC Children’s Hospital of Pittsburgh, he wants to help kids forget that they’re sick and transport them into the wonder of Christmas.
“Kids sometimes are kind of starstruck … they’re really amazed that Santa is in front of them,” he said.
Dufort breaks that ice by telling jokes and answering questions about his reindeer and the North Pole. Of course, kids also tell him what they want for Christmas. But instead of presents, patients sometimes ask him to make them healthy.
In those situations, Dufort said he explains that Santa is a toymaker. “I have lots of magic, but unfortunately, I can’t do certain things,” he tells them. “But what I can do is, Mrs. Claus and I can pray for you often.”
A visit from Santa can be a big relief for kids who spend Christmas in the hospital, said Scott Maurer, a pediatric oncologist who also specializes in hospice and palliative medicine at UPMC Children’s Hospital of Pittsburgh.
While Maurer and his colleagues work hard to get kids well enough to go home for the holidays, sometimes that’s not possible. To accommodate those patients, the hospital sets up special mailboxes for them to send Santa notes to let him know where they are. But a visit from the man himself is especially reassuring.
“There were kids peeking out of their doors … and you see kids running back to their rooms from like the playroom or whatever, because they know that Santa’s coming,” Maurer said.
Beyond December, the hospital does crafts and games on Valentine’s Day, arranges an Easter Bunny visit in the spring, and coordinates trick-or-treating for kids getting in-patient care on Halloween.
These holiday rituals aren’t merely acts of generosity and tradition. Kids undergoing exhausting and painful treatments need resilience, and cultivating that capacity is a big part of Maurer’s work.
A serious illness can become a child’s identity. Kids might not be in school or spend much time with their siblings. Some travel to UPMC Children’s from other states, which removes them from their communities.
Patients need to feel that their lives have meaning and value, Maurer said. And joyful experiences like meeting Santa help preserve some of the best parts of being a kid.
“Disease may be affecting your whole childhood,” said Maurer, “but this part of your childhood is untouched.