Monsters skating for a cause

Photo: Cleveland Monsters

by Caroline Halloran | AHL On The Beat

Nearly a decade has passed since the seeds of a remarkable partnership were planted between the Cleveland Monsters and University Hospitals. Since its development, the partnership has flourished. Now, the duo are set for the second University Hospitals Rainbow Babies & Children’s Night, set for tonight at Rocket Mortgage FieldHouse.

The focal point of the game extends beyond hockey and celebrates the resilient spirits of children who have become a part of the UH Rainbow family alongside the hospital’s determined staff. Throughout the night, patients and medical staff will be highlighted both in-arena and via a livestream feed from a watch party held at University Hospitals Rainbow Babies & Children’s for those unable to attend the game. Last year’s game generated $23,000 for the children’s hospital through sales of merchandise, game worn jerseys, and other fundraising.

The night’s most sentimental touch lies in the details of the Monsters’ attire. The team will wear specialty jerseys inspired by the vibrant hues of UH Rainbow and an “I Skate For” patch that adds a personal touch from the children themselves.

While the UH Rainbow Babies & Children’s Hospital houses many stories of resilience and courage, one child in particular stands out, casting a radiant light.

As former Monsters Hockey Club members, Peyton Giesey and her family will be in attendance and find that these games provide an opportunity to unwind and relax, describing hockey as their happy place. Making the night extra memorable, defensemen, Corson Ceulemans will be “skating for her.”

Peyton has a rare neurological disorder and genetic mutation called Rett syndrome, which is primarily found in girls, occurs in one of every 10,000 children, and affects all bodily functions.

Peyton’s early months matched the energy of any baby, but at six months old, she started losing her balance and the ability to sit up by herself. After leaving numerous doctors’ visits with more questions than answers, her mom Kim started doing her own research. She eventually went to a geneticist at UH to have her daughter tested for both Rett and Angelman syndrome.

“I needed someone who was going to test for these two things, because I knew it was one of these two,” Kim said. “We tested, and sure enough, it was Rett and that was at 18 months.”

Between six and 18 months, Peyton started losing her ability to swallow and had to go to UH Rainbow to get a gastrostomy tube. New challenges arise every couple of months or years, depending on how fast the syndrome develops.

“Anything that happens to these girls is so much more traumatic to them than we think,” said Kim.

Last year, Peyton had a spinal fusion, which has been her biggest surgery yet.

“She had a lot of complications from that surgery,” said Kim. “It changed a lot of her internal organs because the scoliosis was so bad that her organs were squished to one side.”

It’s just Kim taking care of Peyton, but she realizes that while it is a challenge, it has made her relationship with her daughter that much stronger, and she serves as Peyton’s biggest advocate.

As UH Rainbow Babies & Children’s Hospital has forged a relationship with the Cleveland Monsters, they have also become a family to Peyton and Kim. Over the course of Peyton’s care, a dedicated team makes her time with them as comfortable as possible.

“I stay here with her day and night, and they make sure that we are both taken care of,” said Kim. “And I know that I am able to go home and do the laundry if needed and feel that she is in the best hands.”

Although Peyton is non-verbal and non-mobile, she still shares a passion for all things sports with her mom and her brother, including hockey. Peyton enjoys being around the fans, seeing the lights, and attending her favorite game of the season: Pucks and Paws Night.

“She is so social and so happy when she goes to games and loves to meet people,” said Kim.

While hockey serves as a moment of unity for the family, it is also a metaphor for Peyton’s journey. There are several parallels between player development, hard work, and overcoming challenges that mirror Peyton’s battle, her spirit, and her journey. Peyton is a hard-working young girl who puts her heart and soul into her life without giving up.

Even though Peyton is not able to do things on her own, “she is my heart, and I am her voice,” said Kim.

Peyton’s story carries a profound message of the importance of awareness. The more people know about such a rare syndrome as Rett, the more knowledge and research is able to be done to help affected children and their families.

“It takes a village,” said Kim. “The support you get from friends, family, school system, hospital system, doctors, and pharmacists is all crucial in making life easier.”