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 interferes with 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 been living at the orphanage in Pittsburgh, Pownall told Spotlight PA. The hospital provides specialized pediatric care for medically fragile children.
“We only count our moments, not our days,” Pownall said.
Earlier this month, Pownall and Nash enjoyed a magical moment: They met both Santa and Mrs. Claus at the hospital.
Against a paper recreation of a brick fireplace, the Christmas 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 donated by a church.
Perhaps most importantly, Pownall got a picture of his son with Santa to celebrate this milestone.
Nash is nonverbal, but Pownall said he loves interacting with people and she could tell by his face and body movements that he was enjoying his festive guests.
“Santa just sees Nash as another kid,” Pownall said, “and that’s very important.”
Although the Children’s Home works to create a warm atmosphere through activities such as circle time, seasonal decorations and lots of toys, life in a hospital can be upsetting. Children 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 during the holidays, said Danielle Church, a child development specialist at the hospital who works with children like Nash.
A visit from Santa can help them get through the sadness of a less-than-ideal Christmas.
“He walks the halls and rings the bells, and it brings this sense of magic to the families,” Church said.
Santa and Mrs. Claus visiting Nash drove their red Jeep down from a suburb of Buffalo, New York.
“I’m helping 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 spirit helps evoke a sense of magic for children, they said, especially those who might question 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 an elf riding a motorbike.
“It just gave me so much joy. So I called (Brian) up and said, ‘We’re doing this,’” she said.
The Horwoods said they direct any money they receive to charity. This year they are raising money 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 United States 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 those children live in Pennsylvania.
Being a Santa for critically ill children is a big responsibility, said Chris Dufort, aka Pittsburgh Santa.
When Dufort becomes his cheerful alter ego and visits UPMC Children’s Hospital in Pittsburgh, he wants to help children forget they are sick and transport them into the wonder of Christmas.
“Kids are sometimes kind of starstruck … they’re really surprised that Santa is in front of them,” he said.
Dufort breaks the ice by telling jokes and answering questions about his reindeer and the North Pole. Of course, the children also tell him what they want for Christmas. But instead of gifts, patients sometimes ask him to make them well.
In those situations, Dufort said he explains that Santa is a toymaker. “I have tons of magic, but unfortunately I can’t do some things,” he tells them. “But what I can do is that Mrs. Claus and I can pray for you often.”
A visit from Santa Claus can be a big relief for children who spend Christmas in the hospital, says Scott Maurer, a pediatric oncologist who also specializes in hospice and palliative medicine at UPMC Children’s Hospital in 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 these patients, the hospital sets up special mailboxes so they can send Santa notes to let him know where they are. But a visit from the man himself is particularly reassuring.
“There were kids peeking out their doors … and you see kids running back to their rooms from like the playroom or whatever, because they know Santa is coming,” Maurer said.
After 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 inpatient children on Halloween.
These holiday rituals are not just acts of generosity and tradition. Children undergoing grueling 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. Children may not go to school or spend much time with their siblings. Some travel to UPMC Children’s from other states, removing them from their communities.
Patients need to feel that their lives have meaning and value, Maurer said. And happy experiences like meeting Santa help preserve some of the best parts of being a kid.
“Diseases can affect your entire childhood,” Maurer said, “but this part of your childhood is untouched.”
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