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Group raising awareness of misunderstood condition

POSTED: September 17, 2013 12:29 a.m.
Crystal Ledford/

McKevor Tatum, 12, who has mitochondrial disease, works with occupational therapist Jill Feldman on Wednesday at Building Bridges Therapy.

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The phrase, “go green,” has taken on a new meaning for a group of about 10 families in Forsyth County.

While green typically refers to being environmentally-friendly, for these families the color stands for mitochondrial disease awareness.

For about a year, the families — all of whom have children with the condition — have been coming together on a regular basis and serving as a support group.

Forsyth resident Lisa Tatum organized them as a way to bring together families impacted by the medical condition.

Her 12-year-old son, McKevor, was diagnosed with mitochondrial disease, mito for short, at age 5 and she was recently diagnosed with it as well, after suffering a wide range of medical problems throughout her life.

Tatum said metro Atlanta has become a place to which more families who deal with the condition have started relocating, due to doctors here who specialize in the condition.

“I started noticing on [social media] pages that there were more and more of us in this north area that weren’t always able to get down to Atlanta group events, so I started a page online for the north Georgia mito families,” Tatum said.

That eventually became the official name of the local group.

The Forsyth residents involved with North Georgia Mito Families meet once a month for lunch. There also are several other families in surrounding counties who join in for a night out about every two months, Tatum said.

She and other group members say having a child with the condition can be frustrating since it’s not well understood, even in the medical community, and can manifest itself in many ways.

“Every child, no matter what, is affected differently,” said Kim Savagdis, whose daughter Amelia has the condition. “There’s not one child that has the same blood work, the same symptoms, the same anything.”

Genetic testing is the only way to completely confirm a mito diagnosis. Information from the United Mitochondrial Disease Foundation states that it can include a wide range of symptoms, and other diseases can be triggered or aggravated by the condition.

Mito results from failures of the mitochondria, specialized compartments present in every cell in the body except red blood cells.

Mitochondria are responsible for creating more than 90 percent of the energy needed by the body to sustain life and support growth. When they fail, less energy is generated within the cell.

As a basic description, the disease causes the body to not be able to properly turn food into energy. Since all cells need energy to survive, the condition can impact every system of the body.

The condition is thought to be primarily hereditary, although it can also spontaneously occur. Some people can be born with the condition while others develop it later in life.

For those in the local support group, the condition manifests itself in many different ways.

Svagdis, for example, said Amelia doesn’t have normal muscle tone, so at almost 2 years of age, she’s still working on sitting up by herself. She’s also developmentally delayed and has epilepsy.

Becca Spinelli’s daughter, McKenzie, 3, also has epilepsy and some autism-like symptoms. Mito causes her immune system to be less resistant to common sicknesses too.

“In December we almost lost her to the flu,” she said.

Christine Hanily has five children, but only her fourth, son Casey, has mito. He also suffers from a range of issues including low-muscle tone and developmental delays.

Lisa Tatum said she was like many adults with the condition in that she suffered an array of medical problems and could never understand why.

“I’ve had 16 surgeries, but it wasn’t until this year that I got genetic confirmation that all these miscellaneous problems I’ve had my life — lupus and Crohn’s disease, back problems and joint issues — it all falls under mitochondrial disease,” she said.

While the symptoms may be different, all involved with the North Georgia Mito Families have a common goal. That’s to raise awareness and understanding of the condition.

As a result, they’ve organized a variety of activities for National Mitochondrial Disease Awareness Week, which is always the third week of September.

Earlier this month, the Forsyth County commission signed a proclamation officially recognizing the awareness week.

Among activities are fundraisers at local restaurants each night of the week. With fliers, a certain percentage of proceeds will go to the United Mitochondrial Disease Foundation.

On Wednesday, the community is invited to “light the night green for mito” by lighting a green candle or shining a green light bulb and posting photos on social media pages to raise awareness.

Svadgis said awareness is important because the condition is so misunderstood.

“A lot of people who see our children think they’re normal,” she said. “Even some of the medical professionals that we see think something is wrong with the parents, that we’re just making these things up about our children. It’s very hurtful and it doesn’t get us anywhere, so it’s a shame.”

All of the parents are glad they have found complete understanding within the group.

“When you get the diagnosis, you’re whole world changes and sometimes even your own family doesn’t understand and they think you’re crazy,” Spinelli said. “When I found [this group], it’s been a connection that you can’t even explain.”

Added Savagis: “They take on my burdens and I take on theirs and we balance it out. I get choked up because I don’t think I could do it without them.”

 

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