a miracle on broadway

The Generosity Of One Christmas Wish

Words by Andrea Arntson | Photography by Brittney and Caleb

Achild is a powerful human being. When an adult slows down long enough to allow themselves to be led through the world of a child, they can learn so many things. There is an opportunity to remove the obscured lenses we view the world through and see the innocence and wonder of our surroundings as a child does. And if offered the rare opportunity, there is a chance to understand just how miraculous the world can be.

When meeting Keaton Nelson, a ten-yearold boy who had received his wish from the Make-A-Wish Foundation of North Dakota to be Santa Claus in 2015, I was gifted with that rare opportunity.

Keaton, who is now ten and in fifth grade, was born with cystic fibrosis— a progressive disease that affects the lungs, digestive system and several other organs. Being born with the disease, there isn’t much else Keaton has known. With his infectious grin and boundless optimism, it’s impossible to see the difficulties he faces on a daily basis.

“He’s on albuterol, Pulmozyme and amikacin,” his mom, Kristen Peterson explains. “He has his vest treatments for 30 minutes, twice a day. Albuterol helps to open the airways, Pulmozyme to break up the mucus and then the amikacin to aid in the infection.” Keaton takes approximately 25 pills each day when he eats food high in fat, protein and carbohydrates to aid in absorption.

Treatments are done twice a day for 30 minutes each, the medications running individually through a nebulizer as the vest pulsates to break up mucus in Keaton’s chest. If he gets sick, treatments are increased to three or four times a day.

In April, Keaton was finally able to be taken off the antibiotics he was put on in November when diagnosed with a serious lung infection. He was on four different IV antibiotics, requiring five IV infusions a day in addition to the medications he was on regularly.

With his condition also comes diet restrictions. “High fat, high salt and protein,” his mom lists. “We do tube feedings overnight for five nights a week to help maintain and gain weight. Back in November, when his infections were first diagnosed, he was on 24/7 tube feedings because the side effects from the antibiotics were making him so ill, he was losing weight and could not keep any weight on.”

Keaton’s parents were aware of the risk of Keaton having cystic fibrosis before he was born, thanks to state laws that require genetic testing be offered. Keaton was the first child in North Dakota to be diagnosed with cystic fibrosis based on the testing, two weeks after his birth. Both his mom and dad tested positive as carriers of the cystic fibrosis gene. “There’s a one in four chance that if you have two parents who are both symptomless carriers of the gene, that you will have CF,” his mom says.

The family was connected to Make-AWish through a referral from a family member who knew what they were going through. Make-A-Wish grants the wishes of children with life-threatening medical conditions to enrich the human experience with hope, strength and joy. They operate on a referralonly basis, accepting referrals from medical professionals, the child themselves, a parent or legal guardian, or a close family member who has significant knowledge of the child’s condition. The condition must be life threatening and either progressive, degenerative or malignant, and put the child’s life in danger. Once eligibility is determined, volunteer wish granters are sent out to meet the wish child and their family.

Keaton’s wish was simple—to be Santa Claus. Or, more accurately, “Keaton Claus”—as he was dubbed—so that he could help other children be happy who were chronically ill and in Sanford Children’s Hospital in Fargo.

“Most kids are stuck in the hospital for a few days,” Keaton says, “and I thought that if I could bring them toys and candy and stuff, they would probably feel better.”

“He’s such a neat kid,” his mom says. “He’s always thinking of others. He’s always concerned about others well-being.”

With a family so focused on his well-being, this comes as no surprise.

Keaton’s family is currently working on transitioning the responsibility of Keaton’s medications to him, giving him independence and the ability to be involved in his care. Keaton, however, is working on his next wish—to be a doctor that helps children like him.

Cystic fibrosis is an “orphan disease,” and its research receives little government funding compared to other diseases. Cystic Fibrosis Foundation itself does not receive any funding. To learn more about Cystic fibrosis and see opportunities for contribution, please visit the Cystic Fibrosis Foundation website at fightsf.cff.org or cff.org.

To learn more about Make-A-Wish visit northdakota.wish.org or call 701-280-9474. You can be a part of making wishes like Keaton’s come true.

Story submitted by Heartland Trust