ST. PAUL -- Leo's Law, named in honor of a blue-eyed baby from Jackson, cleared its final legislative hurdle Monday and requires only the governor's signature to become law.
The law will officially designate the third full week in September each year as Mitochondrial Disease Awareness Week.
"I had been watching since Friday the livestream video where you can watch the House sessions on the Internet. And we had been waiting and waiting, and it was such an up-and-down ride," said Lynn Clark, of Sioux Falls, S.D., the grandmother of Leo Chapman-Nesseth, who died just days after his only birthday.
Though the Alpers syndrome that took Leo's life is rare, it is just one of many diseases that affect the mitochondria, the tiny parts of cells that function like power plants and provide energy for the cell. With defective mitochondria, cells have no energy and eventually will die off, causing organs to fail.
Mitochondrial diseases are extremely common. According to the United Mitochondrial Disease Foundation, every 30 minutes a child is born who will develop a mitochondrial disease by age 10, and at least one in 200 people have a mitochondrial mutation that could potentially lead to a disease.
Mitochondrial dysfunction has also been linked to dementia, Alzheimer's, Parkinson's, diabetes and high blood pressure.
Due to pressure at the Capitol to complete a budget, Leo's Law had been taken off the legislative calendar on Sunday. After a grassroots effort and with the help of Rep. Rod Hamilton, R-Mountain Lake, the bill made it back onto the calendar Monday and passed in the Minnesota Senate, 129-1.
"The anniversary of Leo's death is coming up on June 9, so had it not gone through, I think there would have been some sadness -- they would have had to start over with the process," Clark said.
Leo's parents, Lindsay Chapman and Andrew Nesseth, were in Boston when they heard the bill had passed. They reacted with laughter, tears and thanks for the many people who helped their family and those who helped move the bill forward.
"Even though the law is named Leo's Law in memory of Leo, they very much want to focus on the fact that ... they did this to give back, so that other families that are dealing with kids that have mitochondrial diseases of any sort can get help," Clark said. "They want it put out there that this isn't about them. There are families all around that might be struggling."
An energetic child
People from across the state of Minnesota are involved in the effort to raise awareness of mitochondrial diseases. One of them is Stacey Pieper, the vice president of the Minnesota chapter of the United Mitochondrial Disease Foundation.
Stacey, formerly of Estherville, Iowa, and her husband, Michael Pieper, formerly of Windom, live in New Market with their two children, Brendan, 7, and Brooke, 5.
Brooke is a lively, healthy-looking girl who giggles and laughs just like any other child her age, though she can't walk or talk.
She was diagnosed with mitochondrial and encephalomyopathy, complex 1, when she was a year and a half old. Doctors haven't managed to trace exactly where the defect in her mitochondria lies, and children with a complex 1 diagnosis can have radically different symptoms.
"There are kids that have the complex 1 diagnosis that are walking and talking normally and just have some exercise intolerance, and some kids that ... can't lift their head off a pillow," Stacey said. "Brooke is 5, but she's probably more like a 12-month-old. She doesn't walk, she doesn't talk. She can certainly let us know what she wants, but it's more with gestures."
Stacey knew something was wrong with Brooke early on. As a 2-month-old, the fussy baby didn't smile or make eye contact. The geneticists put the girl through a barrage of tests and finally, a doctor in Georgia was able to make the diagnosis.
"It means a different way of life," Stacey said. "It means learning everything all over again, learning how to live with someone who has an illness, and learning how to fight a disease that doesn't have a cure."
Fighting for the future
Stacey feels lucky that Brooke is still as healthy as she is, but the little girl's future remains uncertain.
"We honestly don't know if she will live to be 10, if she'll live to be 20 or if she'll live to be 80. A lot of kids with mitochondrial disease don't live past their teenage years just because it takes so much energy to live," Stacey explained. "That's probably one of the most frustrating things, is to not know the future. I have no road map."
Stacey has been on the board of the Minnesota chapter of the UMDF for two years.
"Those of us that have kids that are affected, our greatest dream is that they'll come up with a cure some day, if not for our kids, then for other kids that are affected," she said.
In order to accomplish that goal, people first need to be aware that mitochondrial diseases exist, Stacey said.
Leo's Law, should it be signed by Gov. Mark Dayton, will be a critical step forward in raising awareness about the problem.
Sen. Doug Magnus, R-Slayton, authored the Senate version of the bill, along with Sen. Mike Parry, R-Waseca, and Sen. Ted Daley, R-Eagan.
"I was pleased to do it for the family and in remembrance of this young fellow (Leo)," Magnus said.
Hamilton, Rep. Joe Schomacker, R-Luverne, Rep. Kelby Woodard, R-Belle Plaine, and Rep. Keith Downey, R-Edina, were the authors of the House version of the bill.
"When I stood up and presented the bill, it was refreshing because it was a calm that came across the chamber," Hamilton said.
Hamilton intends to continue raising awareness of mitochondrial diseases in the future. He and the families involved in the UMDF have requested an official signing ceremony for the bill.
"It's heading to the governor, and hopefully it'll become law," Hamilton said. "I'm extremely optimistic."
"Leo's Lions," a team of people with ties to Leo from all over the region, will again raise money to fight mitochondrial disease and walk in the 2011 Energy for Life Walkathon Sept. 10 in Bloomington.
To join Leo's Lions or donate, visit www.energyforlifewalk.org/Minnesota and click on Find a Team.