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Filmmaker focuses on 3-year-old with rare disease

The daily struggles of three-year old Hunt Hollis and his family were recently captured in the documentary film, “Not a Statistic.” The film illuminates the daily challenging reality of raising a child who has a very rare form of mitochondrial disease, a chronic genetic disorder that causes the mitochondria of the cell to fail to produce enough energy for the cell or organ to function.

The 36-minute film, by aspiring filmmaker Shelby Hadden, will premier at the Franklin Theatre on Thursday, March 14 with a VIP reception at 6 p.m., the Red Carpet at 6:30 and the film at 7 p.m. as a benefit for the Hunt Michael Hollis Fund, a component fund of the Community Foundation of Middle Tennessee, a foundation to support Hunt and other children affect by mitochondrial disease.

Tickets for the documentary may be purchased online at www.teamhunt.org and are $50 for VIP seating and reception and $20 for general admission.

“This is my reality,” Ellen said in the film. “Any parent of a special-needs child realizes taking care of that child is the most important role in life. It definitely puts things in perspective for me and it’s the hardest thing I’ve ever had to do.”

Life with Hunt didn’t start out that way.

After a normal pregnancy and birth, Hunt Michael Hollis passed all his newborn tests and doctors declared him to be a healthy baby boy. Happy, proud parents Ellen and Michael Hollis took their baby home, but it wasn’t long before they realized something wasn’t right. Their so-called healthy baby boy was throwing up several times a day and it wasn’t the normal baby spit-up, Ellen said adding Hunt didn’t seem to be growing.

When regular checkups didn’t show anything, at six-months little Hunt underwent extensive gastro-intestinal examinations at the Monroe Carell Jr. Children’s Hospital at Vanderbilt. After four days and three nights in the hospital, doctors still couldn’t find anything wrong with the little guy.

By the time Hunt was a year old, it was painfully obvious something was terribly wrong. He wasn’t hitting the developmental milestones babies developing normally hit during their first year and doctors still weren’t finding the problem.

“When he turned one, we sent his records to doctors all over the United States,” said Ellen, who at that time, was the director of events for the Nashville Symphony. “Atlanta Children’s Hospital called. They recognized the symptoms so we went there and they performed a test that looked at his mitochondrial.”

That was when analysts discovered a rare genetic mutation on his mitochondrial DNA. They also found it was inherited from his mother.

“I have it at 20 percent but Hunt has it at 57 percent,” Ellen said. “There is no history of anyone in the family having had it. We would have never known except for the DNA test.”

Mitochondria make the energy cells need to grow and do their work in the body. If they are damaged or malfunctioning, the cells can’t carry out their functions. Mitochondrial disease takes on many forms so it is difficult to identify.

There is no other case history of the specific mutation Hunt has so there are no statistics, no previous experiences, no past records of how fast the disease progresses and how it will affect Hunt as he grows older.

Since mitochondria perform so many different functions in cells throughout the body, each disorder comes with a spectrum of abnormalities and many organs may be affected. There is no cure, according to the United Mitochondrial Disease Foundation.

“There are so many unknown factors – we don’t know the future,” said Ellen, who is now a special events consultant with Ellen Hollis Events LLC. “For me I look at it as a positive.”

Because Hunt’s case is so unique, to Ellen and Michael, anything is possible and nothing is impossible.

“Doctors thought Hunt would never walk,” Ellen said. “With the therapies he receives, he’s gone from not walking, to using a walker, to running, jumping and dancing.”

Hunt receives physical, occupational, speech, feeding and most importantly to Hunt, music therapy, which is incorporated into the other therapies.

“He is the kind of kid, when you tell him what to do – he doesn’t do it but if you sing and make it a game, that really works well,” Ellen said.

The approach to treating mitochondrial disease is frequently similar to treating childhood cancer.

Since Hunt’s body doesn’t use food to produce what his organs need to function, three times a day he takes a vitamin cocktail which includes Vitamins B1, B12, C and E as well as several supplements.

 “We can tell the difference in him when he’s sick and can’t get a cocktail down,” Ellen said.

In 2010, Ellen and Michael formed Team Hunt to raise funds to find a cure, raise awareness about a disease that often goes undiagnosed – as the Hollis family discovered – and to help other families.

For the Hollis family, the future is today. The unpredictability of the disease makes hopes and dreams for tomorrow an unknown, but Hunt continually inspires his parents.

Currently with the help of his therapies and cocktails, Hunt is a happy, normal, inquisitive, active, full of life, curly-haired, adorable three-year old with big blue eyes.

 “He’s doing fantastic,” Ellen said. “His doctor at Vanderbilt Children’s Hospital checks his levels every six months. They are monitoring his major organs – that’s what will be affected. Over time, as the disease progresses major organs will begin to fail.

“We don’t know what’s going to happen to Hunt. All we can do is give him the best therapy,” she said. “The message of this film can apply to all families. We are not a statistic. Hunt is not a statistic.”

Posted on: 3/12/2013

 
 

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