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Child of Inspiration: Annie




We are having a fundraiser to help Annie who is eleven years old, attends Elementary School and will be entering 6th grade. All that know little Annie admire her courage and determination despite all the obstacles she has encountered in her short life due to Mitochondrial Disease. Annie began to have severe photophobia (sensitivity to light) when she was still an infant. This photophobia and pain escalated to the point where it was determined that Annie needed bilateral corneal transplants at age four. The transplants went well, but Annie had difficulty recovering from the many surgeries involved and other medical issues came into light. During the time period of the cornea transplants, Annie was admitted to a hospital due to low bicarbonate and potassium levels. At this time it was determined that Annie was suffering from Renal Fanconi Syndrome, a kidney disorder that affects absorption of electrolytes into the bloodstream. Over the next few months, Annie spent many weeks in the hospital due to complications from this disease. Because of the rare medical symptoms that Annie was exhibiting, it was eventually determined through extensive genetic testing that Annie was suffering from something called Mitochondrial Disease. She has a large deletion in her mitochondrial DNA. Mitochondria are the powerhouses of the cells in your body and when there is a lack of power, cells die. Eyes, kidneys, muscles, heart and brain are the most commonly damaged areas of the body, but it can affect any system. Mitochondrial Disease is a progressive disease and there is no known cure. This diagnosis was devastating to Annie’s entire family. Annie’s disease continues to rob her of her health. She has needed surgery for placement of a g-tube for feeding and for medications. She also has a mediport inserted in her chest to use daily for ten to twelve hour infusions of fluids and electrolytes. Annie developed severe glaucoma and in a very short period of time lost all vision in her left eye and the majority in her right eye, leaving her legally blind. Her hearing has also deteriorated to the point where cochlear implants are necessary as long as she is strong enough for the surgery. Annie also suffers from severe cramping in her hands and feet and has muscle weakness often requiring use of a wheelchair. With lack of power to her cells, she gets extremely tired. She was also most recently diagnosed with diabetes. Her bedroom has been converted into a makeshift hospital room complete with IV equipment and hospital bed so that it could cut down on so many hospital stays by providing most care at home. Through all the medical procedures that Annie has to deal with daily, she maintains a fantastic attitude and rarely complains. She goes to school when she is able and does well, she has friends over to play, she is learning Braille and sign language, she plays TOPS soccer, she reads an incredible amount of books, she takes art lessons, and most of all, Annie LOVES life. She brings out the best in every person that she meets. Annie has been the inspiration in countless people’s lives. Anyone that meets this sweet little girl is touched by her strength and fortitude. Please allow this little girl to touch your life by being part of hers.



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