Lee Allen Benefit Concert for Harlie Holt - November 22 at the Lyman Lake Lodge in Lyman, SC

Nov. 20, 2009 - PRLog -- Lee is proud to announce his appearance at a benefit show on Saturday, November 22nd at the Lyman Lake Lodge in Lyman, South Carolina.   The benefit, hosted by The Giving Rose is in honor of Harlie Holt, a 10 year old girl with Mitochondrial Encephalomyopathy, or Ataxia Syndrome, a disease that prevents the body from making the energy necessary to run normal bodily functions.

Imagine if you were four, six or even 10 years old and waking up in the morning unable to get your body to literally crawl out of bed to the restroom.  This has been Harlie Holt her whole life.  Having never known the feeling of “normal” body function, she has just recently started asking about walking like others her age, or skating by herself.  She is a strong child that loves and is loved unconditionally.  

One would not think that deep inside Harlie’s body there is an incurable neuromuscular disease that claims the lives of 80% of patients before the age of 20. Harlie was diagnosed in 2003, when she was 4 years old, via muscle biopsy with a progressive, metabolic, degenerative neuromuscular disease called Mitochondrial Encephalomyopathy (Ataxia Syndrome). This disease prevents Harlie’s body from producing the energy needed to breathe properly, digest her food and exercise frequently.  Other symptoms include easy and frequent fatigue, seizures, sleep apnea, developmental delays, muscle weakness as well as some of the classic symptoms of Autism.

 This diagnosis came after having endured multiple invasive tests to find out what was wrong and why her body did not seem to want to function properly.  The mitochondria produce over 90% of our body’s energy to keep us alive and also to help us grow.  When the mitochondria fail, as in Mitochondrial Disease, cells become injured and can die.  Energy is part of life. Without it, not much happens. We often don’t pay much attention to the energy we use, until it is gone. With Ataxia Syndrom, many bodily functions only work intermittently and sometimes not at all. fact, some systems become so devoid of energy they run out of steam, causing the majority of problems associated with the disease. In Harlie’s case, her brain, heart, kidneys, and all other muscles are affected and to some extend, many other parts of her body.

It’s been 5 years since Harlie's diagnosis, and over the years, her friends and family have learned, with the help of her medical team and friends, how to deal with this disease.  Harlie uses a wheelchair, and unfortunately can not walk on her own at all.  In addition to Ataxia, Harlie also has an expressive and receptive language disorder; a coordination disorder along with her physical demands.  Some days require 16 to 18 hours of sleep in order to recharge and gain the energy to overcome the demands of her daily life.

Most of Harlie’s 14 daily doses of medication are unfortunately not covered by insurance, leaving her family with enormous monthly medical bills.  In addition to her appointments with multiple specialists, these drugs have been able to slow the progression of the disease.  

If you would like to make a donation to help Harlie and the fight against Mitochondrial diseases, you can visit http://www.thegivingrose.org/giving-rose-store.php or send them to the following address:

Christal Holt
2265 Fews Chapel Rd.
Greer, SC 29651

For more information on Mitochondrial Encephalomyopathy, feel free to visit www.UMDF.org or www.MITOACTION.org

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