Shawn Henfling shares his story of Princess Abbi and her courageous battle with Leigh’s Disease.
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Everyone should have a hero in their life. The Merriam-Webster dictionary defines the word hero as “a person who is admired for great or brave acts or fine qualities.” Take careful note of the word they use: person. I cannot find a reference to a hero solely referencing an adult, which brings me to my next point. My hero is a child, a young girl of four, and whom I’ve known for about two years. Princess Abbi, as I call her, has been diagnosed with a genetic disorder falling on the Mitochondrial disease spectrum. There is no cure, and the disease becomes progressively more debilitating with each passing day. Abbi isn’t my hero because of the disease, but because of who she is and how she has dealt with it.
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One of my best friends has four beautiful daughters and an amazing wife. Yes, you read that right, four. Best yet? All four are very young. I tell him all the time I cannot wait for him to live through the teenage years. I look forward to being a fly on the wall and laughing, exponentially more than he laughs at me now, for the trials I have with my own teenage daughter. One of those is Princess Abbi, who brightens my day, no matter how dark it may be, with her smile. Unless she is especially ill, that smile is super-glued to her face when I’m around, and it is addictive. Even during the depths of my own depression, Abbi’s smile was like a contagion, there was no escape. So what right? Lots of toddlers smile. Heck, half of them drool and smile and poop and laugh. None of their four girls are normal, and they are all extraordinary in their own right, but Princess Abbi positively shines.
So what is a mitochondrial disease? I won’t get into much detail, in part because I don’t know, and in part because you, avid reader, probably don’t have time to read a dissertation. Suffice to say, it is a failure of the mitochondria in the cells of the body to provide the energy needed for growth and life sustaining bodily functions. As more and more cells are affected, things like fine motor control, respiratory reflex, and many other neurological functions become degraded. The disease is fatal, there is no cure.
Mitochondrial Disease is an inherited chronic illness that effects how the body creates energy. It causes debilitating physical, developmental, and mental disabilities with symptoms including poor growth; loss of muscle coordination; muscle weakness and pain; seizures; vision and/or hearing loss; gastrointestinal issues; learning disabilities; and organ failure. About 1 in 2,000 people has Mito. It’s progressive and there is no cure.
I haven’t mentioned what the kind of people her parents are, and I won’t call them out by name. They are truly extraordinary in every way. To witness them around their daughters is to be a spectator to true strength, devotion and love. I am energized by their tireless efforts to incorporate everyone, including Abbi, in all of their family activities, dance class included. To me, it is a privilege to be around them, and to interact with their girls. I find myself looking for reasons to see them all simply because of how I feel afterward. I know, in fact, that I’m not the only one who feels this way. I’ve not met a single person who leaves the princess without feeling inspired. Our entire community has rallied around them not simply because of Abbi and the ravages of her disease. We rally around them because they all inspire us to be better than we are, and to love.
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Abbi has been hospitalized more often than I can count and occasionally for long stretches. She has been a human pin cushion, on a feeding tube, and constant IV’s and monitors. She’s been tested, retested, and tested again. She endures physical therapy (thought not always with a smile), nurses and doctors as well as her normal medicine with a grace and acceptance uncommon for people five times her age. Despite everything, she smiles. When things aren’t going smoothly and her parents want to shout to the heavens, Princess Abbi smiles. When I visit her in the hospital, her parents by her side and my heart in my throat, Abbi smiles. When nothing seems to be going the right way, Abbi smiles and lights up the room.
Abbi has Leigh’s Syndrome, which is a type of Mitochondrial Disease. It is one of the more severe subsets of the disease characterized by significant muscle deterioration and respiratory distress. Her parents were advised that she wouldn’t see her second birthday. On August 25, 2014 she turned 4 which is a true testament to her strength and determination.
Abbi is my hero not because of her disease, but because of the way she lives her life. Despite everything, she is happy. I frequently refer to my battle with depression as being “far down into the rabbit hole.” I think Abbi is one of those people who is simply able to step over the rabbit hole without a second glance and continue skipping through the forest, admiring the abundant life around her. My hero is a four year old girl with every reason in life to give up, but who fights on, enjoying every last second of the sights and sounds around her. My hero is generally unabashedly happy, and that is why I want to be more like her, and why I’m grateful for every opportunity to be around the whole family.
To Learn more about UMDF: http://www.umdf.org/site/pp.aspx?c=8qKOJ0MvF7LUG&b=7934679
Title Photo: Jeffrey Kontur
Photo of Abbi: Delicia Brown
Amen Shawn! Well said! She and her family are a true gift from God!
Thank you for the kind words.
Thank you for writing this! My daughter has mito, in the beginning we suspected it was Leigh’s. Thank you for writing about this beautiful child and for helping to spread mitochondrial disease awarness and for sharing the link to the UMDF page!
She is now my hero as well. Thanks for telling me about this little person.
Abbi is truly an inspiration, and someone from whom we can all learn a lifetime of lessons. Thanks for the kind words.