Euharlee family helps UMDF spread awareness about mitochondrial disease
by Marie Nesmith
Sep 12, 2011 | 4264 views | 0 0 comments | 27 27 recommendations | email to a friend | print
Mallory McElhaney, right, demonstrates with out-stretched hands how exciting building blocks can be with her sister Finley. The sisters have been diagnosed with Leigh’s Disease.
SKIP BUTLER/The Daily Tribune News
Mallory McElhaney, right, demonstrates with out-stretched hands how exciting building blocks can be with her sister Finley. The sisters have been diagnosed with Leigh’s Disease. SKIP BUTLER/The Daily Tribune News
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As Mitochondrial Disease Awareness Week approaches, Patrick McElhaney and his wife, Dawn, are trying to raise public consciousness about the disorder that has impacted their two youngest daughters.

Both diagnosed with Leigh's Disease, the sisters -- Mallory, 6, and Finley, 2 -- are experiencing various symptoms related to the neurometabolic syndrome, such as low muscle tone, gastrointestinal problems and speech issues. Leigh's is one of more than 40 mitochondrial diseases that result in the failure of the mitochondria, a compartment in most cells that produces about 90 percent of the body's energy.

"They both have feeding tubes and actually Mallory has a central IV line. It's basically a permanent IV line for nutrition and IV medicine," McElhaney said, adding Mallory, who also has been diagnosed with two other mitochondrial diseases -- Complex I and Complex IV deficiencies -- is having kidney problems as well. "[Their health condition] has impacted them immensely. They have all of the physical problems associated with the disease. ... Right now their hearts are good and that's good [news]. [However] their brains are really affected, the neurological part because ... it's one of the major [focuses of the disease] of course.

"So with their day-to-day [routines], they both have home health nurses 40 hours a week. There's so many medications and supplements that they have to have. ... And with the low muscle tone, that hypotonia, that's really affected their speech. It's affected their walking and just recently Mallory, she has scoliosis also. Her back at 6 years old is like that of a teenage girl with scoliosis because her muscles can't support the back. Both of them have had difficulty holding themselves upright at an early age."

With both girls fatiguing easily, Mallory currently utilizes a wheelchair when needing to travel long distances, and her sister should receive her wheelchair by the end of the year.

"The short-term and, I guess, really the long-term [goal] is to maintain what they have now," said McElhaney, a resident of Euharlee. "Very seldom, if ever, do patients get better. There's no cure for what they have. We've been told typically they won't live out of childhood. ... It is definitely a struggle.

"We've come to appreciate each and every day not just with our two youngest daughters but with our older daughters [Lauren and Anna Kate] too. God's just blessed us with so many helpers and opportunities. We have people that offer their help at our church that come that clean our house, that cut our yard, [that have] taken down trees. You name it, they've helped us out. And the community has really helped us out too, as far as supporting and helping us spread the word about mitochondrial disease."

Along with Pleasant Valley South Baptist Church, another organization is Mallory's school, Euharlee Elementary, which is holding a community blood drive through Blood Assurance in her honor Friday from 9:15 a.m. to 4 p.m. The school also is planning various activities during Mitochondrial Disease Awareness Week Sept. 18 to 24, which will raise awareness for mitochondrial disorders and funds for the United Mitochondrial Disease Foundation and the McElhaney family's nonprofit, Mal's Pals.

"It is in honor of her and to support her and her family," said Sharon Collum, principal of Euharlee Elementary School. "We just love Mallory and we just wanted to do what we could to support our kids. Mallory, she's been required in the last little bit to have several transfusions.

"So it's important that that blood is available and it's not just Mallory. Kids all over [need blood] but it's really touched home here because we know and we love Mallory, and we see the affects and what's happening. So we just want to be able to support her and her family in whatever way that we can. So through the blood drive, through the awareness week, we're just able to get that information out there and hopefully one day they'll find a cure."

During Mitochondrial Disease Awareness Week, the UMDF is helping raise awareness by suggesting activities and trying to establish a nationwide week in honor of the disease. Georgia is one of 10 states that already have permanent resolutions in place.

According to www.umdf.org, "Every 30 minutes, a child is born who will develop a mitochondrial disease by age 10. Each year, 1,000 to 4,000 children in the United States are born with a mitochondrial disease. While exact numbers of children and adults suffering from mitochondrial disease are hard to determine because so many people who suffer from mitochondrial disease are frequently misdiagnosed, we now know the disease is approaching the frequency of childhood cancers. Many are misdiagnosed with atypical cerebral palsy, various seizure disorders, childhood diseases and diseases of aging. Still others aren't diagnosed until after death."

Along with raising awareness, the UMDF has supplied almost $8 million in grants since 1996, supporting research to discover less invasive diagnoses and a cure. For the McElhaney family, being members of the Atlanta Chapter of the United Mitochondrial Disease Foundation has helped tremendously, providing them with information through the Internet and annual symposiums.

"We are hoping to cast a larger net by creating a greater degree of awareness about mitochondrial disease," said UMDF's CEO/Executive Director Charles A. Mohan Jr. "It's not as rare as we once thought. Research tells us that one in every 200 people carry a mutation that could develop into mitochondrial disease at some point in their life.

"We hope that research to find a cure for this disease will benefit those that have mitochondrial disease, as well as, those that have healthy mitochondria. We all have mitochondria, and if we know more about how they work we can all have healthier lives, avoid mitochondrial diseases that affect the aged, and live to enjoy a long and happy retirement."

For more information about the UMDF and mitochondrial disease, visit www.umdf.org. McElhaney also encourages residents to view the family's Mal's Pals Facebook page. He and his wife also are available to speak to civic groups or other organizations about mitochondrial disease. They can be reached at 706-346-8848 or dawnmcelhaney@gmail.com.