Mito-Kids

Living with the "Disease behind the Disease"

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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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Posted in Uncategorized | 1 Comment »

Mito-Kids Fundraiser Article in Herald

Posted by mitokids on 17th April 2009

from The Portsmouth Herald

http://www.seacoastonline.com/articles/20090417-NEWS-90417022

WHAT: Mito Kids Zumba with Angela Fund-raiser

WHERE: The Rockingham Ballroom, 22 Ash Swamp Road, Newmarket

WHEN: Friday, April 17; 6 to 7 p.m.

COST: $6

WEAR: Loose, comfortable clothes

INFO: About the film and upcoming fund-raisers, www.mito-kids.com or write to mitokids@gmail.com

By Jeanné McCartin
features@seacoastonline.com
April 17, 2009 11:33 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. The Mito-Kids Zumba with Angela Fund-raiser, in support of the film’s production, is scheduled for Friday, April 17 at the Rockingham Ballroom in Newmarket.

“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 heart. 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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Posted in Medical, Uncategorized, family | 1 Comment »

Zumba Fundraiser Announced

Posted by mitokids on 22nd March 2009

Thanks to many volunteers who want to see this film made we have 3 fundraisers in the works.

Mark your calendars for April 17th

The first fundraiser will be a Zumba class in Newmarket with Angela Garcia check out her website at http://zumbawithangela.com/ it will be at the Rockingham Ballroom in Newmarket, almost 20 years after Wanda and I had our wedding reception there.

Signup details will be online soon. if you would like to be notified of the event or help volunteer send us an email mitokids@gmail.com

Zumba® Fitness is a cardio dance fitness program created by Columbian star choreographer Beto Perez. It incoroporates international rhythms such as merengue, salsa, cumbia, cha-cha, reggeaton, bellydancing and more in an interval aerobic workout. Participants generally burn between 400-800 calories an hour. More astoundingly, though, is the amount of people that report that for the first time in their life they actually enjoy and look forward to working out!

The Event will be a fundraiser to raise money for the production of the documentary film “Mito-Kids” working in conjunction of Annie’s Angels, a Stratham, NH

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Posted in Uncategorized | 1 Comment »

Now on iTunes

Posted by mitokids on 13th March 2009

mitokidspodcast
You can now subscribe to our videos on iTunes, so you can get our videos straight to your computer, iPod, iPhone, iAppleTV, or however your eye watches video.

Mito-Kids iTunes

RSSIf you dont use iTunes you can use this feed

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Posted in Medical, Video, family | 1 Comment »

Stanford finds new tests to diagnose Mitochondrial Diseases

Posted by mitokids on 10th February 2009

Found this article while researching the best Mito researchers in the country.

New Test for Mysterious Metabolic Diseases Developed at Stanford/Packard

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Posted in Medical | 1 Comment »