Mito-Kids

Living with the "Disease behind the Disease"

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The Gossip Lady visits Hatchling and discusses Mito-Kids

Posted by mitokids on 20th October 2009

The Gossip Lady visits Hatchling and discusses Mito-Kids

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New Hampshire Screenings announced

Posted by mitokids on 6th October 2009

Mito-Kids: Documenting Life will have 2 screenings at the 2009 NH Film Festival Oct 15-18

Mito-Kids schedule at NHFF

Marc Dole and Hatchling also have 5 other films in the festival and will be sponsoring the Friday night party at the Gaslight.

Please join us in this special screening of our short film “Mito-Kids:Documenting Life”. We are continuing to raise awareness for the feature version of the film and your support is greatly appreciated.
Marc & Family

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Portsmouth Herald Article #2 Film documents local family's struggle with genetic disorder

Posted by mitokids on 22nd April 2009

from The Portsmouth Herald

http://www.seacoastonline.com/articles/20090421-LIFE-904210301

Film documents local family’s struggle with genetic disorder

MORE INFO
For information about the film and upcoming fund-raisers, visit www.Mito-Kids.com or write to mitokids@gmail.com.

By Jeanné McCartin
features@seacoastonline.com
April 21, 2009 6:00 AM

Triage is not a word commonly used in most households. But it is at the Dole home.

“It’s medical and education triage, for whoever needs it the most that day,” says filmmaker Marc Dole, owner and founder of Hatchling Studios, a Portsmouth-based animation company.

Marc and Wanda Dole, who live in Nottingham, met in high school and had their first child while both were 19. Today they have four daughters, all with mitochondrial disease — a chronic, genetic disorder that occurs when cell mitochondria fail to function properly.

Marc Dole is completing “Mito-Kids: Introduction,” a short documentary on his family’s life and daily challenges. “Mito-Kids” is no ordinary film for a number of reasons. For starters Dole hopes it will help “brand” the disease, like so many diseases that have “star power” behind them to get the message out.

It’s also a fund-raising tool for a full-length version, with the intent that both it and the short film will help educate the public and attract research funds.

But “Mito-Kids” is most unique for the clips taken from more than 100 hours of the Dole family’s home videos, shot over the past two decades. They start, like so many, capturing the joy of a first child’s birth, and later the three younger siblings. But it also chronicles the developing health issues caused by an illness, undiagnosed or misdiagnosed for years.

The footage includes holidays and family vacations and seizures and hospital stays and will include interviews with medical experts and original animation.

The list of individual challenges differs with each Dole child. As a family they deal with seizures, deafness, diabetes, immune disorders and severe learning and developmental disabilities.

The two oldest Doles are “medically sensitive.” “It’s a word my wife uses,” he explains. “It just means at any given time, my older two girls Britney (19) and Nikiya (17) could have a seizure and their heart could stop. AND the heart could stop because of the medication we give for the seizure. It’s a crazy thing.”

Crazier was not knowing what afflicted their girls. They were still unaware at the time the twins were born, Ashley and Alyssa, now 15.

When the children were diagnosed in 1994, they were told there were only 290 families dealing with it in the United States. As for families with multiple mito-kids, with widely varying effects, “You couldn’t Google it in 1994,” says Dole. “So we didn’t know there were others out there until about a year ago when I started researching again.”

Still little is known of the disease, or why individuals are affected so differently. Dole said he looks at the differences in his daughters’ lives and wonders what tipped which scale. The two oldest lived their earlier years in a house with radon, discovered only they moved, and have different vaccination histories than the two youngest.

One twin is deaf, the other hard of hearing, both are diabetic and have other health issues. But neither have seizures and both are developmentally normal. Did the radon and vaccination differences alter the disease’s effect?

“This is what I’m trying to find out in the documentary. Does it matter? Was it chance?” he says. “I don’t want to be known as the leader of the disease but I want to get the story out there. …; And it can help (others affected) by letting them know they’re not the only ones dealing. For 10 years, we thought we were.”

These days the Dole family home videos are being edited and logged, while additional filming of experts is being done. The short will be finished in time for submission to the Cannes Film Festival’s Short Film Corner.

Dole has received an intent-to-broadcast letter from New Hampshire Public Television. The New Hampshire ABC affiliate, WMUR-TV 9 has aired the first of four planned behind-the-scenes news pieces about the project.

Last Sunday, Dole started to work the short film’s voiceovers. Shortly into it he choked up, he said. “I thought, ‘That’s right. This is me. …; I just talked about my daughters,” he says. “For us, a lot of this is just getting to the next point and getting through what you’re doing.”

Right now he’s ready to get this out there; he’s ready for some answers.

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