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Submitted photo Leo James Chapman-Nesseth was just a year old when he died of Alpers disease, a rare genetic disorder of the mitochondria.

Family raises awareness for rare disease

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Family raises awareness for rare disease
Worthington Minnesota 300 11th Street / P.O. Box 639 56187

LAKEFIELD -- Leo Chapman-Nesseth -- a brave, sweet-tempered baby with inquisitive blue eyes and a smile that almost couldn't fit on his face --celebrated just one birthday before a rare genetic disorder claimed his life June 9.

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He spent it at the Minnesota Zoo wearing a home-made crown, seeing the animals, tasting chocolate frosting, opening presents and even getting soaked in a sudden rain shower.

After the party was over, his parents, Andrew Nesseth and Lindsay Chapman of Lakefield, brought him back to the Mayo medical facility in Rochester, where he was admitted to the pediatric floor and given blood tests.

About four hours later, Leo's parents learned that this hospital visit was going to be different from the many emergency room stops and overnight stays they had already been through.

This time, Leo wouldn't be leaving the hospital.

Instead, Alpers syndrome, the rare genetic disorder that made Leo literally a one-in-a-million baby, would cost him his life.

From health to illness

Leo was born June 6, 2009, a pink, perfect baby boy with 10 fingers, 10 toes and a larger-than-life personality.

"He was perfectly normal and healthy through the first six months of his life," Nesseth recalled. "There was nothing unusual at all."

During his sixth, seventh and eighth months, his parents started to wonder why he wasn't talking more. Leo seemed to be a bit delayed developmentally, but his parents thought perhaps it was just because he was a boy, and was bound to develop differently than his three-year-old sister, Sylvia.

Everything changed March 5.

"We woke up like on any other day... Leo was sleeping with us and (Chapman) noticed his hand was clenched up," Nesseth said. She couldn't get her thumb into his tiny fist, and when she lifted his arm, it just dropped.

Something was very wrong with Leo, and his parents weren't sure what it was, so they brought him to the emergency room.

It was only the first of many visits to many hospitals for the Chapman-Nesseth family, and there, Leo was tested for the first of many times. His arm was twitching ever so slightly, but he was smiling and seemed cheerful enough.

After consulting a neurologist in Sioux Falls, S.D., Leo's doctors told his parents that their baby had suffered a simple partial seizure, presenting itself only in his right arm. To prevent long-term damage, the seizure had to be stopped, so they treated him with anti-epileptic drugs.

They also had to get an IV into Leo so he could be flown to better facilities via helicopter. Because he was slightly dehydrated, his caretakers had a difficult time getting into a vein, poking the baby with the needle for the better part of an hour. As Leo became more and more upset and stressed, his seizures grew progressively worse and overtook his entire right side.

Finally knocked out by the heavy medication, Leo was given another barrage of tests to try to figure out what was wrong.

The test results were normal.

"We were left with good news, in that our son didn't have a brain tumor or something like that, and bad news -- we still didn't know what was causing the seizure," Nesseth said.

The seizures

Doctors determined the seizure wasn't necessarily harming Leo, and eventually they gave the boy a dose of steroids equivalent to that given to an adult with a spinal injury.

The massive dose of steroids worked, and Leo was seizure-free -- but only for a couple days. After that, his seizures returned and the Chapman-Nesseth family started spending more and more time in hospitals, for tests and for treating Leo's multiplying medical problems.

During one study, doctors found the baby was actually breathing in some of his milk, putting him in danger of pneumonia, so they put in a gastrostomy tube. The tube allowed Leo's parents to place his milk directly into his stomach, so it wouldn't get into his lungs.

But the March 21 surgery set Leo back, stressing his body. He went from sitting up and getting ready to crawl to being a newborn all over again, because the parts of his body that seized never had time to regain function.

Leo contracted pneumonia and his seizures spread to his left side.

"That was really heartbreaking to us because we knew... that was a really bad sign," Nesseth said.

Over time, the family met with pediatricians, anaesthesiologists, geneticists and neurologists.

"It was really comforting, really reassuring, knowing that you had tens of people, smart people, thinking about Leo," Nesseth said.

But Leo was progressively getting worse, despite all of the doctors, despite his family's efforts and despite his own plucky, smiley personality.

Alpers disease

In mid-May, Leo was finally diagnosed with Alpers disease, a fatal, degenerative disease of the mitochondria, the tiny parts of cells that act like power plants. With defective mitochondria, cells have no energy and the body cannot function.

Certain genes code the replication of mitochondria. Both Chapman and Nesseth are healthy because both carry a dominant gene that allows mitochondria to replicate correctly. However, both also carry a recessive gene that causes mitochondria to be copied defectively.

It was a one in 250,000 chance that Chapman and Nesseth -- both unknowingly possessing the recessive gene for Alpers -- would pair up and have a child. And it was a one in four chance that child would get both recessive genes and suffer from Alpers disease.

In other words, in contracting Alpers disease, Leo was literally one in a million.

"We got that diagnosis on May 15, and of course we were devastated and shocked, angry, everything that any parent would be when you find out your child has a terminal illness," Nesseth said.

Leo became increasingly ill, and he was baptized June 8. At 5 a.m. on June 9, he died.

Energy for Life

Life has been difficult for the Chapman-Nesseth family since Leo's death.

"Everything is so much harder because Leo is not here," Nesseth said. "Everything seems arbitrary and pointless."

While the family has struggled to make sense of the senseless and find hope in a seemingly hopeless situation, they have also taken action, raising awareness of mitochondrial diseases and raising money to fight them.

Nesseth's cousin started a team, Leo's Lions, for the Energy for Life Walkathon, an event of the United Mitochondrial Disease Foundation designed to increase knowledge of mitochondrial illnesses and raise funds for research into their causes.

Alpers disease is only one of many mitochondrial diseases, some of which are fatal and some of which allow people to live nearly normal lives. Unlike cancer, however, few people know about mitochondrial illnesses.

Nesseth has set his sights high in preparation for his first Walkathon, which will be Sept. 11 in Bloomington. His goal is to raise $5,000 on his own, and for Leo's Lions to generate $20,000 for mitochondrial disease research efforts. Future fundraisers are still in the planning stage.

"We just can't sit back and (say) 'Oh, if it happens to someone else, it's not us,'" Nesseth said. "...There's no good to take away from a child dying. I just can't think of anything more important for us to do. We just need to do anything we can do."

Click here to donate to the team members of Leo's Lions.

To read more about the Chapman-Nesseth's family's experience of Alpers disease, visit http://www.caringbridge.org/visit/leochapmannesseth.

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