Out of struggle, family seeks hopeAll three of Bill and Andrea Emery's children are thought to have a rare, but severe form of mitochondrial disease. Several months after receiving the diagnosis, the family is coping with the emotional and financial toll of the illness.
Correction: The paper edition of this story identified two churches holding fundraisers for the Emery's. Only one, Svea Lutheran Church of Hager City, will hold a fundraiser, scheduled this Sunday from noon to 2 p.m.
HAGER CITY -- It's 6 p.m. at the Emery household, and the family of five is settling down after dinner.
Noise blares from a neighboring room, where an 8-year-old boy is watching cartoons. A 6-year-old girl asks her mother how to spell a word for a homework assignment, as a toddler competes for her attention.
"F-A-V-O-R-I-T-E, as in 'you're my favorite,'" says her mother.
It's a scene that would be familiar to most parents, but the Emery's aren't like most families. If doctors are correct, the odds are against any of the children living through their teenage years.
All three of Bill and Andrea Emery's children, Bill, Quinn and Joey, are thought to be afflicted with a rare and severe form of mitochondrial disease, a group of disorders that affect the mitochondria -- the famed "powerhouses" of the cell. Andrea Emery also shows symptoms of the maternally linked genetic illness.
The symptoms are varied and seemingly unrelated: Eyesight is impaired and can eventually lead to blindness, muscles are weakened and prone to injury, affected children can exhibit learning disabilities.
What all the symptoms have in common, says Emery, is that they get progressively worse with time. So far, the Emery children seem relatively normal compared with other children their age, she said.
"If you walked in and just started talking to them, you wouldn't know," said Emery. "But it affects everything."
Signs of trouble
When Bill and Andrea Emery found out that their 6 month-old daughter Quinn's heart could fail at any moment more than five years ago, they did what many parents would do: they hoped for the best and took an infant CPR class.
"It was like taking death sentence 101," said Bill Emery.
Quinn's heart gradually started to improve, but she began exhibiting other, seemingly unrelated ailments. She became ill easily. Her muscle tone was poor. She began talking and walking later than other children.
An eye test conducted on Quinn in January of 2009 was a sign to doctors that a larger problem afflicted the Emery family.
"That's the first time we knew something bigger was going on," she said.
Later blood tests showed symptoms consistent with Chronic Progressive External Opthamoloaegia Plus, a variety of mitochondrial disease that spreads 100 percent of the time from mother to child.
The results of a muscle biopsy released in February confirmed that diagnosis.
Doctors now operate under the assumption that all three of the children in addition to Andrea have the rare illness. The family routinely travels to a specialist in Atlanta for further tests and treatment.
Holding out hope
Now, several months after receiving the diagnosis, the family is struggling with the financial and emotional costs of the illness.
Andrea says the most difficult part is knowing that the illness spread from her. It was only after the couple had their third child, Joey, that doctors pinned the ailments afflicting Quinn to a maternally linked disease.
"It's the absolute shame of knowing my kids are struggling with a disease I passed onto them," she said.
But the illness has also brought unexpected rewards, she said. Complete strangers have offered assistance. The congregation of Svea Lutheran Church is holding a fundraiser for the family on Sunday. The Emery's attend a church down the road.
Emery said the family, used to giving as part of their jobs -- Andrea works in the Goodhue County probation office and Bill is an agriculture teacher at Hammond High School -- has had to get used to receiving help.
"For everything we receive, we try to give a little back," she said.
The family is holding on through faith and hope for a cure to the illness, said Emery. After she lamented Monday that Quinn would never have children of her own, Bill shook his head and said "don't say that." Andrea smiled.
"Bill has a tough time with 'nevers,'" she said.