Family raises money, awareness for mitochondrial illnessesJACKSON — Only a few months after blue-eyed baby Leo Chapman-Nesseth passed away, 80 of his friends and family members in southwest Minnesota and northwest Iowa have raised $43,000 for researching treatments for mitochondrial diseases — one of which took Leo’s life when he was just 1 year old.
JACKSON — Only a few months after blue-eyed baby Leo Chapman-Nesseth passed away, 80 of his friends and family members in southwest Minnesota and northwest Iowa have raised $43,000 for researching treatments for mitochondrial diseases — one of which took Leo’s life when he was just 1 year old.
And the battle to increase public awareness and funding for research on mitochondrial illnesses has only just begun. Leo’s Lions will gather in Bloomington today for the Energy for Life Walkathon, led by his parents, Andrew Nesseth and Lindsay Chapman of Jackson.
“One of the things Lindsay wanted to stress is that it’s a tribute to Leo, but it’s also a tribute to the people in the community,” Andrew said, thanking all the people who contributed money and time to the cause. “It shows how good the people are in our community.”
Leo suffered from Alpers disease, a fatal, degenerative disease of the mitochondria, the tiny parts of cells that serve as their power plants. With defective mitochondria, cells have no energy and the body cannot function. And Alpers is only one of many mitochondrial diseases — some fatal, some progressively debilitating and some merely causing fatigue.
“Mitochondrial diseases affect a lot of people,” Andrew said, though they are not as well understood by the public as cancer, AIDS or influenza. “Every 30 minutes, a child is born who will, by age 10, develop a mitochondrial disease.”
Advocates are working to obtain a permanent funding stream for research into treatments for mitochondrial diseases from the National Institute of Health, but have not yet succeeded.
The Energy for Life Walkathon is a United Mitochondrial Disease Foundation event meant to focus the efforts of fundraisers and raise awareness of mitochondrial illnesses.
The Walkathon has certainly focused the efforts of the Chapmans, the Nesseths and the 96 members of Leo’s Lions. Anne Simonsen, Andrew’s cousin, has worked tirelessly to promote the cause to politicians and help people understand mitochondrial diseases. The Rock Nobles Cattlemen’s Association raised nearly $20,000 in a single evening auction.
Registration for the Walkathon begins at 7:30 a.m. today, with the 1.9-mile walk starting at 9:30 a.m. After the walk, many members of Leo’s Lions will head to the zoo, where Leo celebrated his only birthday.
The Walkathon isn’t going to be a one-time event for Leo’s family, who will continue to educate and advocate for those striken with mitochondrial illnesses, hoping for a cure or at least more effective treatments.
“This is unbelievably difficult for us, but we also recognize we got to have Leo for a year. We are not the only ones with a sick child or loved one,” Andrew said. “We’re not alone in experiencing these types of tragedies. We all need each other.”
To donate to Leo’s Lions, visit www.energyforlifewalk.org and click on Energy for Life: Minnesota on the left center of the page. Click on the link to Leo’s Lions on the Minnesota page.
To read more about the Chapman-Nesseth’s family’s experience of Alpers disease, visit http://www.caringbridge.org/visit/leochapmannesseth.