April 6, 2018 at 1:53 p.m.
MITO HOPE
Adirondack parish supports family with health issues
Ms. Evans is the founder of Mito Hope and Help, a non-profit 501(C)(3) sponsored by the Washington and Albany County chapters of the New York State Association for Retarded Citizens (NYSARC). The group strives to create a supportive community of people with mitochondrial disease and their families -- including Ms. Evans and her three children.
Mitochondria in cells are responsible for respiration and energy production. According to the Centers for Disease Control and Prevention, mitochondrial disease -- often just called "mito" -- occurs when the mitochondria don't work efficiently to turn sugar and oxygen into energy.
The Cleveland Clinic lists symptoms of mito as poor growth, muscle weakness, autism, diabetes, kidney disease, thyroid problems, dementia and more. It says symptoms vary largely by case.
Ms. Evans said her oldest daughter, Randi, passed away because of the disease almost six years ago. Randi had wanted to make support and health care more accessible to people who suffer from mito, so Ms. Evans started the Mito Hope and Help group.
Randi had severe stomach issues and complications from immune deficiencies. "She wanted to pass away at home," said her mother. "We held her; we talked to her. We were right there till the last second. She went from this world to the next. It was beautiful."
Now, Ms. Evans manages Mito Hope and Help while taking care of her other daughter, Brooke, who's 32. "She's developmentally disabled, but high-functioning," Ms. Evans said. Her third child is 31-year-old Drew, who also has mito, but is able to live on his own.
Brooke was just granted permission to use medical marijuana, something Ms. Evans believes is helping her. However, it's not covered by health insurance, so Ms. Evans is pushing New York State Senate bill 3250A and Assembly bill 5174A, which would make insurers cover medications, supplements and vitamins pertaining to mitochondrial disease as prescription drugs. The bills stand in committee.
Paying for medical care for her family has not been easy, Ms. Evans said. She left her job as a medical assistant at Albany Memorial Hospital because of a medical crisis of her own, but now dedicates her time to her children.
"Mito can affect every organ and body system," said the advocate, noting that, for years, people denied that the disease existed. Recently, mito has been in the news because of the Justina Pelletier case, in which Boston Children's Hospital was sued for removing a child from her parents' custody. The hospital's position was that Justina's health problems were more psychological than physical.
Ms. Evans herself has been accused by Boston Children's Hospital of having Munchausen syndrome by proxy -- a disorder in which a parent or caretaker exaggerates or causes a child's illness -- because of her children's seemingly random, yet extreme medical conditions.
"Every person [with mito] is affected differently," Ms. Evans stated. "You will always have unique symptoms. That's one of the things that makes it so hard to understand and diagnose and treat."
The Evans family was not diagnosed with mito until the children were 17, 18 and 19 years old.
However, over more than three decades of hospital visits and medical bills, the Evanses have always had the support of their parish, St. Cecilia's in Warrensburg.
"This little church has great compassion," said parish life director Sister Linda Hogan, CSJ, noting that parishioners financed and installed a roof on Ms. Evans' home one summer.
"I knew it was leaking," recalled Sister Linda. "I just said to the community, 'Do you think we could?' And on the way out the door, I had people handing me piles of money. I had people saying, 'I'm a roofer, I can do it.' It came together after two Masses."
St. Cecilia's also takes up several second collections each year for Mito Hope and Health.
"She has a mission, and it's a God-pushed mission," Sister Linda said of Ms. Evans. "She's just full of the spirit of Jesus."
Ms. Evans wants recognition of mito. She said physicians were largely unfamiliar with the disease until the mid-1990s.
Mito Hope and Health sponsors outings at the Six Flags Great Escape amusement park in Lake George, and has held medical symposia with Albany Medical College. Ms. Evans has been involved with a documentary about the disease currently in production, titled, "This is Mito."
"We fight so hard," she told The Evangelist. "It's little steps. We are trying to educate healthcare providers and the community as a whole.
"With God, all things are possible. I just ask for prayers."
(For more information, go to www.mitohopeandhealth.com.)[[In-content Ad]]
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