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Hope. Energy. Life -- Mitochondrial Disease and a Pickens Woman's Battle

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By Ceciley Bierman

I know this is a tad late, but I hope you'll consider sharing it regardless.  It regards Mitochondrial Disease Awareness Week and the very inspirational story of my best friend, Meaghan McConnell, as she fights this disease.

My hope is that maybe those who are affected by this disease(or any other disease for that matter) gain hope from this story.  And even if readers aren't affected by a disease, they'll be inspired to fight tooth and nail for what really matters to them.

An article about her was published in the Pickens Progress in November 2008, “Meaghan McConnell still Making Plans Despite Incurable Disease.”

Above, They said over and over that she'd only live another 6 months max,  Meaghan McConnell, left, with best friend and the writer of this story, Ceciley Bierman.


September 18th through the 24th is Mitochondrial Disease Awareness Week. Mitochondria are referred to as the "power house" of the cells in our body. They're what gives us 99 percent of our energy. When something goes wrong with the mitochondria, the person experiences a wide variety of symptoms such as extreme fatigue, weight loss, muscle loss, loss of feeling in extremities, visual and hearing loss, neurological problems and learning disabilities, and more.      

About one in 4,000 children in the United States will develop mitochondrial disease by the age of 10 years. But this doesn't mean teenagers and adults can't get it. Most kids don't survive and only half of teens do. They say adults have a better chance of survival, but that doesn't mean it's any easier for them.

I wanted to share with you the story of my best friend (and the woman who will be my maid of honor at my wedding). Her name is Meaghan McConnell. She was a healthy, happy teenager. She was a cheerleader at Pickens County Middle School. She enjoyed dancing and goofing off. She always had some visual and hearing impairments, but nothing too serious.

In the spring of 2006, she was at a consultation for a cochlear implant to correct her hearing. The doctor noticed she had slight balance problems and thought maybe there was something going on. She had an MRI done to look for a brain tumor and some blood work done, but it wasn't until the fall that she started to feel like something was wrong and it started to show. That started the process of extensive testing. Her mom asked them to test for mito, but she didn't have enough symptoms and it was considered a childhood illness. She didn't have the neuro problems and was considered "too bright and aware/alert" for a mito patient. The disease is also considered to be genetic and no one in her family was sick, so doctors kept ruling it out.

In March 2007, she had declined so much and so rapidly that doctors began treating for mito. The official diagnosis didn't come until June, right before she turned 17. By this point, she was already on her deathbed.              

The doctors told her multiple times she wouldn't last six months. She had a feeding tube in to try to get her weight back up, but she stayed in the 80s. She developed severe scoliosis, lost her hearing completely, lost her sight, lost feeling in her hands (which had curled like someone with cerebral palsy) and feet...we all feared the worst.

And then one day, she started turning around. Doctors said it was a fluke and soon she'd be back on her death bed. They said she'd never walk again. They said she'd never hear again. They said she'd never see again. And they said (over and over) that she'd only live another 6 months max.

Meaghan is 21 years old now. Her vision has not only come back, but improved a lot over the past two or three years. She can walk on her own and the feeling is beginning to come back in her hands and feet, although she has a hard time walking in the dark because of the lack of feeling still. Her hearing is kind of coming back, but the sounds she hears aren't being translated properly by her brain so she has a hard time understanding words. But even that seems to be improving, slowly but surely.

She had the feeding tube removed in 2008 when she was in the 90 pound range and by early 2010 she was just over 100. She did have a relapse in the summer of 2010 which had her down to 65 pounds, but after the feeding tube was put back in, she's maintaining an 85-90 pound range. She's recently quit physical therapy because it wasn't challenging her enough and she now works out at the local gym with a trainer. She has increased her muscle mass and her hands are strengthening significantly and starting to straighten out.

The reason I wanted to share her story with you is 1) to increase the awareness of this horrible disease that has no cure and no treatment and 2) to show that miracles happen if we believe in something strong enough and fight for it hard enough.

When I posted her story to Facebook for Mito Awareness Week, she commented "A little boy with mito died either early today or late last night. THAT'S why I'm fighting...maybe something that helps me could help them..."

She wanted me to mention that doctors are still learning about this disease and what they can do to help. Meaghan's case is extremely rare because this is a disease that most don't come back from.

I hope that her story touches your lives like she's touched mine. I'm honored to call her my best friend and my hero.

If you'd like more info on Mitochondrial Disease and what you can do to help, visit the United Mitochondrial Disease Foundation's website at www.umdf.org.

Comments   

Erin McConnell
+2 #1 Erin McConnell 2011-10-03 23:54
cec- you did such a good job of telling meags story and bringing awareness. Its good to know that she is going to be okay even with me gone. Thanks for being such a good bestfriend to her.
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Asia
0 #2 Asia 2011-10-08 04:46
Beautiful. You did a great thing writing this.
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