by Elise Reuter
In an emotional moment, Jordan and Bailey Larkin cut hospital bands off of the wrists of hundreds of students at the end of this year’s KU Dance Marathon. Jordan, 16, wants to be a geneticist. His 14-year-old brother, Bailey, wants to be an orchestra teacher. Since birth, both have fought Shwachman-Diamond Syndrome, genetically inherited disease that affects the bone marrow and the pancreas. It can be difficult to find treatment, as the disease is rare, affecting 1 in 500,000 births.
“Their blood cells don’t work to fight off infection, so when they get something like a cold it just snowballs, and can turn into a life-threatening situation. They go to the hospital a lot for antibiotics and treatment to keep them from getting too bad,” said their mom, Nancy Carson.
On average, the boys have four to six hospital stays each year. They go to the University of Kansas Medical Center for most of their treatments, where they work with five to six different specialists in tandem with each other.
“I think they’ve saved their lives and made the quality of life better too, because they’re sick a lot,” Carson said.
Jordan and Bailey aren’t the only ones who rely on KU Med for treatments they couldn’t find elsewhere. At Dance Marathon alone, 19 other children were present who all are part of KU Pediatrics, a branch of the Children’s Miracle Network. This year, KUDM raised $61,000 for KU Pediatrics, setting a record for the event compared with the previous four years at KU.
“The fact that we were able to grow the event in terms of dancers and fundraising in one year is huge,” said KUDM Executive Director Megan Watson.
In previous years, KU Pediatrics used the money to create “KU Kids Healing Place,” a palliative care service for terminally-ill children. They also used it to buy an echocardiogram.
“They are able to treat more heart diseases because they have the equipment to do so,” Watson said.
The event also had a record high for the number of students attending, with 540 showing up to dance for the 12-hour marathon. The atmosphere was a giant party for the kids, with students playing rounds of ping-pong, sharing pizza and running races with the “Miracle Children” in between speeches, where parents and children explained their walks with a life-threatening disease.
“Turns out there are two boys from my hometown who have a disease, and they became one of the miracle families that Dance Marathon supports, so I went out there to support them and their family,” said Mike Marcus, a sophomore from Shawnee, Kan. “When you get to know the kids for who they are, you don’t see the disease and you don’t see the pain that they’re going through, but when they’re up on that stage and that’s what they’re talking about, it just pulls a string with you.”
The emotional takeaway is just as strong for the miracle families, who make strong connections with each other and some of the students at the event. In fact, 10 kids returned this year, many of whom had befriended KU students and looked forward to meeting with them again.
“It’s an overwhelming experience to see all of these students who are giving up an entire weekend, day and night to do this, just with such caring attitudes to give back for kids that they don’t even know and to raise so much money for such a great cause,” said Carson. “You get to see some families come together and hear everybody’s stories, all with different paths. Some people have had an illness and they’re over it. Some people have a chronic illness like my boys that’s ongoing— it’s inspirational to hear.”
Click here for more photos of the event.