The Pedersen Family is raising money not only for their youngest daughter Klara, but also for the RYR-1 Foundation.
By KRYSTAL NURSE
The Sun
Klara Pedersen, 8, is a Centre City Elementary School third-grader who is just like any other kid, with the exception that she has recessive Central Core Disease, commonly called RYR1, ryanodine receptor 1, the gene associated with the disease. Her family works every day to make sure that not only is she accommodated in different aspects of her life, but to raise awareness and funds for a cure.
Klara was diagnosed with the rare disorder at 8 months old, and her mom, Emily Pedersen, father, Darren, and sister, Lily, have been raising funds and awareness with various organizations that fund research for muscle diseases since Klara was around 15 months old.
They switched from the Cure Congenital Muscular Dystrophy Foundation to the RYR-1 Foundation two years ago because it focuses on Klara’s specific disorder. The foundation was established in 2014 and has raised nearly $1 million for research, according to the organization.
“Today, we’ve raised, in total, around $100,000 for research,” said Emily.
This year, they’re amping up with excitement again as their Nov. 3 “Dine Out for Klara” fundraiser for Klara and the RYR-1 Foundation at Landmark Americana in Glassboro nears.
“All of the money from our corporate sponsors goes directly to the foundation, and the money from the event goes directly to RYR1 and to Klara to help improve her home to make it more independent for her,” said Emily.
Around $5,000, at the time of publication, is going directly toward the foundation.
It is unclear how many people are affected by the RYR1 gene mutation, however, the U.S. National Institutes of Health classifies it as a rare disease.
Klara has the recessive form of the disorder, which is commonly more severe than its dominant version. She uses a feeding tube to help her eat and also has Scoliosis. She, however, doesn’t have breathing problems, but the family monitors it constantly.
The disease affects all of Klara’s skeletal muscles, according to Emily, so she gets around with a wheelchair that has power-assist to help her move quickly from place to place.
“We don’t have a rancher, we have a ramp to get her in and out of the house and a door opener,” said Emily. “She is able to get around independently. We are looking at getting a lift so she can get upstairs more independently.”
Earlier in the year, Klara was the state’s 10,000th Make-A-Wish recipient, according to Emily and the foundation, and received an Action Trackchair that “looks like a tank.” The chair helps her move around on the beach and on the grass with ease.
Treatment for Klara is in the form of therapeutic horseback riding and outpatient physical therapy, among other things directed by her neuromuscular specialist at the Children’s Hospital of Philadelphia and a pulmonologist.
“When she was born, she was in the [Neonatal Intensive Care Unit] at CHOP for 77 days,” said Emily. “In the first year of her life, she was in and out of the hospital over a hundred days. She has fractures, pneumonias which she’s been hospitalized for two, and then common colds because they can turn into pneumonias really easily for her. ”
But Klara, and her friends, do not allow for RYR1 stop her from being a regular 8-year-old.
Emily and Lilly said Klara loves riding horses, dancing, singing, playing with her Barbies and being the stats keeper for the Mantua Rebels Under 10 soccer team.
“Her friends will oftentimes change the rules of the game to make sure she can be included,” said Emily. “At school, if they’re playing tag, they’ll say ‘you can’t go off the blacktop.’”
In the classroom, Emily said Klara’s teachers are always willing to help her out and to meet her needs.
“Her teacher (Michelle Bress) lowered bulletin boards for her, moved chairs and desks around to make sure that she has space to be able to get around,” said Emily.
“It’s fun and I really like how they support me,” said Klara.
Emily added that when people meet Klara and ask her why she’s in a wheelchair, she usually replies by saying she was born with weak muscles.
The Pedersens hope the foundation is able to find a cure for the muscle disorder in Klara’s lifetime.
The “Dine Out for Klara” event at Landmark Americana runs from 5:30 p.m. to 9:30 p.m. on Nov. 3 and tickets cost $35 for adults (includes food, beer and wine) and $10 for kids (includes food and a non-alcoholic drink). To purchase tickets, contact Emily at (856) 577- 1708 or email her at [email protected].
