This is a repost from
Marc Dole’s documentary, in the beginning, was done on doctor’s orders.
His daughters had been suffering seizures, and the doctors were trying to determine what was causing them. Because Dole was a video professional – his New Hampshire-based Hatchling Studios specializes in animation and postproduction – he had access to video equipment.
“We knew our kids were having medical issues. Seizures, and one of the kids had diabetes, then we found out the twins had diabetes… there was a lot happening, and the doctors had no idea what was going on.
“One of the neurologists said to me, ‘Why don’t you have any videotape of the kids having seizures? I need to see it – every time they come into my office they’re happy, and fine.’ She was very adamant I get these things on tape,” says Dole, whose documentary “Mito-Kids” has grown directly out of that.
The film, which is still an evolving work as the Dole family confronts the medical issues as a family, has also been a work intended to bring awareness of mitochondrial disease, “a chronic, genetic disorder that occurs when the mitochondria of the cell fail to function properly. This is an intimate and personal story that aims to increase the understanding of mitochondrial disease and its connection to epilepsy, diabetes, ALS, Parkinson’s, Alzheimer’s, Heart Disease and many other neurological disorders.” Dole’s four daughters (Britney, Nikiya, Ashley and Alyssa) are now teenagers. Wanda Dole, their mother, served as producer. A short version of the film took a documentary award at the New Hampshire Film Festival.
“I always had decent cameras and was able to shoot home video on decent stuff,” he says, “So it was just home video for the first five years.”
Dole says when his daughters were mainstreamed in the local schools, “It was a great way for the other kids to understand about kids with special needs. And I decided I’d make a film about the mainstreaming of my second-oldest daughter, Nikiya.”
When he heard of another New Hampshire filmmaker doing a project that was very similar, he decided to drop that approach, “but in 2008, when my oldest daughter began to have dementia issues, I began looking back into mitochondrial disease and was shocked to find out how many different strands of it there were, and how many connections there were to every neurological disease. I decided I needed to start letting everybody know this.
He created a three-minute teaser that’s on YouTube. “I’m a video editor and I had the gear, so it was like editing home movies for a while. I began to find a narrative that was much more like a documentary film. Friends who were beginning to udertsnad said I should really be making a feature-length film so I decided to start working on that.”
“Production” began with a family road trip that went from New Hampshire to St. Louis to Orlando and back home. Dole says the family had to drive for a variety of reasons related to his daughters’ conditions.
“When we got back, I began editing, knowing that I had to make it clear why we had to get in the car, why we couldn’t get on an airplane, and why we had to do things that were totally different than the way anyone else would.” He began editing in footage that created backstory and “realized I was make our feature right here.”
He said there were five possible story lines he could have chosen. He began showing footage to colleagues and friends and getting input “so it wasn’t just 90 minutes of home video stuff.”
The 15-minute short led to fund-raising to shoot in Boston, Pittsburgh and elsewhere. Friends worked for very little pay or none at all. He began to contact foundations that dealt with mitochondrial disease, and sought out production partners, potential distributors and networks. “That’s ongoing right to this day.”
Currently, he says, four volunteers are giving at least 10 hours week, helping to do medical research, or production research, or logging new footage. The project has a website that is as much informational about the condition as the film.
One debate, he says, was whether to make the project a nonprofit organization or consider finding for-profit investors.
“I had someone give me $1,000 and say, ‘Give me a business plan and I’ll give you at least $10,000 more. I was intrigued, and considered the for-profit route. Someone else was at $50,000. We began to get things together, then it turned out these two people no longer had the money. So now we were back looking at the 501(c)(3), and have been able to connect with organizations that can give money to nonprofits. We’ve gotten two $1,500 donations just in the last week.”
The shooting of the project goes all the way back to Dole’s Canon L1 (a Hi-8 format camcorder); currently, home video footage is being done on Flip HD video cameras. The project includes interview footage of various experts, shot on Panasonic HVX200 and Sony Ex1 and Ex3, depending on crews he works with for shooting.
“We have 80 hours of home video, and nine hours of interview footage,” he says.
As for his budget, “I’d tell you what it was, if I knew. When we go on a family vacation, but it’s set up with the film in mind, what do I count that as? And then there are people volunteering or working for very little. If I estimated the budget for the short with deferred payments to everyone, I’d estimate it at $25,000.”
Mitochondrial disease is not a subject the Dole family ever wraps on; likewise, the work goes on. The twins have written a script that a Dole friend and colleague is helping them produce. That, surely, will find its way into the documentary. The Doles and their story go on, but they’re working to push up awareness with the film.
The short is viewable on Facebook, “but we’re trying to get someone to take it in the broadcast side,” he says.
“I’m not even asking for a screening fee,” he says. “We’re just looking for a big-impact airing that will get some viewers. Then we’re always pressing on with the feature.”