Sarah Boden’s story for Spotlight PA
This story was originally published in Spotlight PA’s weekly newsletter, How We Care, which offers unique reporting and viewpoints on how we support one another throughout life.Register here for free.
Pittsburgh Katelyn Pownall doubted that her kid, who is three years old, would ever get to meet Santa Claus.
Menkes disease, a rare hereditary condition that impairs the body’s capacity to absorb and transport copper, was present in Nash from birth. In addition to causing connective tissue anomalies in the skin, joints, and bones, this seriously damages the neurological system.
Nash has been residing at the Children’s Home of Pittsburgh since May, and Menkes is terminal, Pownall told Spotlight PA. Children who are medically vulnerable can receive specialized pediatric treatment at the hospital.
According to Pownall, we just count our minutes rather than our days.
Pownall and Nash have a wonderful experience earlier this month when they met Mrs. Claus and Santa Claus at the hospital.
The Yuletide couple offered high fives, presented gifts, and hugged patients against a paper model of a brick fireplace. The Clauses performed a little version of Jingle Bells for Nash. Additionally, a church donated a copy of Where the Wild Things Are and a teddy cat to him.
Most significantly, Pownall received a photo of her son with Santa to mark the occasion.
Although Nash is nonverbal, Pownall claimed that he enjoys socializing and that she could tell he was having fun with his celebratory guests based on his facial expressions and body language.
According to Pownall, it’s crucial that Santa treats Nash like a regular child.
Hospital life can be terrifying, even if the Children’s Home tries to make it feel cozy with activities like circle time, seasonal decorations, and a plenty of toys. Children are surrounded by strange noises and odors. They receive physical therapy, breathing treatments, and needle pokes from strangers.
According to Danielle Church, a child development specialist at the hospital who works with children like Nash, December may be particularly difficult since families want to spend the holidays at home and together.
They can overcome the sadness of a less than perfect Christmas with a visit from Santa.
According to Church, the families experience a sense of magic as he jingles his bells around the hallways.
The Santa and Mrs. Claus who came to see Nash came from a Buffalo, New York, suburb in their red Jeep.
I assist Santa. Brian Horwood, whose velvet outfit with a golden key and a matching belt buckle, claimed that Santa can’t be everywhere at once.
Mrs. Claus, Horwood’s wife Julie, is even more jewelled, with pearls and rhinestones adorning her gown. They claimed that their festive flare helps children, particularly those who might be doubting Santa’s legitimacy, feel a feeling of wonder.
About five years ago, the Horwoods began to make do with less for Father and Mother’s Christmas. When Julie Horwood noticed a Santa riding a motorcycle, she was having a bad day.
That simply made me very happy. “We’re doing this,” she remarked when I contacted [Brian].
According to the Horwoods, they donate their earnings to a worthy cause. This year, they are collecting money to help a surviving mother who gives money to random people.
Christina Boyd, a resident of Erie County, New York, is the woman who leaves money-containing notes in public spaces like supermarkets. According to the letters, the random act of kindness is in remembrance of her son Ollie, who passed away before turning two.
There are more than980,000 childrenin 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. Data from the nationally funded 2019–2020 National Survey of Children’s Health was used by the researchers. More over 37,900 of these children reside in Pennsylvania, the organization discovered.
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.
The fact that Santa is in front of them might sometimes leave kids feeling a bit awed, he said.
Dufort breaks that ice by telling jokes and answering questions about his reindeer and the North Pole. Naturally, children also share their Christmas wishes with him. 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.
BEFORE YOU GOIf you learned something from this article, pay it forward and contribute to Spotlight PA atspotlightpa.org/donate. Spotlight PA is funded byfoundations and readers like youwho are committed to accountability journalism that gets results.
Stories from Spotlight PA
Note: Every piece of content is rigorously reviewed by our team of experienced writers and editors to ensure its accuracy. Our writers use credible sources and adhere to strict fact-checking protocols to verify all claims and data before publication. If an error is identified, we promptly correct it and strive for transparency in all updates, feel free to reach out to us via email. We appreciate your trust and support!