Merrie Sue Holtan, SheSays contributor, Published August 23 2013
Keeping the beat: Moorhead teen has a heart for Camp Odayin
“This is my first pacemaker,” the 17-year-old says pointing to his left. “This is my second one,” again pointing. “And this is my backup.” All in all, he endured 23 surgeries by the age of 9.
His scars say it all for his parents, Stacy and Andy Lund, and younger sister Serina. The scars have formed signs of where a battle has taken place and a family on a journey.
“Basically Alex has congenital heart failure,” Stacy says. “The day he was born, he had two holes in his heart. I knew beforehand he would need surgery and thought he could come home after a few days.
Days turned into months.
Alex has 100 percent heart blockage and is pacemaker dependent. His first surgeries took place at MeritCare (now Sanford Health) and then at St. Mary’s Hospital in Rochester, Minn., under the care of Dr. Rodrigo Rios, who remains Alex’s pediatric cardiologist. Alex has remained stable since age 9.
“It was complicated for our family to bring home a baby that needed portable oxygen, 14 medications and a feeding tube,” Stacy says. “Alex really changed our lives.”
For the past eight years, Alex has spent a week each summer at Camp Odayin, part of Camp Knutson, near Cross Lake, Minn.
It’s the only camp in the Midwest for children with heart disease, those who may be the only heart patients in their schools – the ones who can’t go to other camps because of embarrassment or because camps couldn’t ensure their care.
It was founded in 2001 by Twin Cities native and Concordia College graduate Sara Meslow, also a heart patient since childhood.
“The object of Odayin, which means ‘heart’ in Ojibwa, is to make it a run-of-the-mill summer camp,” Sara says. “We don’t want these kids to feel like heart patients, but just like other kids.”
The camp, which has a $25 registration fee, runs for five weeks in the summer as well as having a winter and family camp in Wisconsin. It is staffed by counselors, who may also have heart conditions, and volunteer doctors and nurses. Sara, herself found out she had a heart condition when she was 13 years old.
With help from Medtronic, where her father worked, she began the nonprofit, raised money, recruited volunteers, developed programs and sought out campers.
Today, Sara’s heart keeps a steady beat with a cardio-verter defibrillator (ICD) implanted when she was 29.
This summer, The Odayin staff presented Alex with totem pole in honor his last official year of camp. He hopes to go back as a counselor.
During this stay, he also earned an anglers award for a large catch.
“I like the tubing, archery and horseback riding, but not the swimmer’s itch so much,” Alex says, smiling. “And of course, Sara, the director.”
“I was hesitant to send him the first year,” Stacy says. “But the staff does such a great job keeping in touch and posting pictures on the website. I think I sent three pages of instructions. The professional staff took away our worries. Alex found new independence.”
Dr. Justin Horner, Bismarck native and pediatric cardiologist at Sanford Health, served as a volunteer at Camp Odayin after graduation from the University of North Dakota School of Medicine. While in training at Mayo in Rochester, Justin spent a week at Odayin as one of two physicians in training, along with two physicians.
“I saw kids just being happy,” he says. “They all had scars and implants and no embarrassment. I’m a kid at heart, so I had a good time too, singing camp songs, doing crafts and water sports.”
Justin describes the staff as simply amazing and Sara as the camp mom.
Besides Camp Odayin, the long haul for the Lund family has included education for Alex in the Moorhead school system. At Moorhead High, he learns basic living skills such as counting money and doing laundry. He has extra assistance from ACCESS of the Red River Valley as he expands on skills for independence. Stacy says he loves school and is the first one up in the morning. To which Alex replies, “Most of the time.”
Alex works at the school as a janitorial assistant and spends free time watching movies over and over (especially Disney) and listening to the director’s comments.
He also creates his own films. During a “Make a Wish Trip” to Disney World, Alex got called forward as a special guest at one of the shows.
“I got to meet Belle and the Beast and take pictures,” he says, smiling.
Recently, Alex had his first date, complete with popcorn and flowers and “the whole family tagging along,” Alex adds, rolling his eyes.
“That’s what I love about Alex,” Stacy says. “He’s not overcomplicated, and he always has a smile on his face.”
“Well, most of the time,” he adds.
Merrie Sue Holtan is a regular contributor to SheSays. She lives near Perham, Minn., and can be reached at firstname.lastname@example.org.