Hope

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Hope's story

 

Hope was born at 26 weeks weighing in at 2 pounds one ounce. She started her life with feeding tubes and breathing tubes in the Neonatal Intensive Care Unit. Her world quickly revolved around doctor and therapist appointments. She was originally diagnosed with Cerebral Palsy, as that was the best fit without testing. As she began a special needs preschool program, the doctors started testing, including an MRI, to determine more specifically what areas of her brain were damaged. Two MRI's later revealed that there was no evidence brain damage. Though Hope was making great gains, it was obvious she would not develop physical skills as compared to her typical peers. Doctor's were puzzled. Symptoms were treated through multiple procedures and surgeries, but nothing was effective. Now as a teenager, she is protective of the railroad track scars on her stomach and back, in addition to the malformed shape of her stomach. Two years ago a doctor suggested genetic testing expecting to find a movement disorder. Instead, a rare form of Mitochondrial Disease appeared. It does not yet have a name or research to help guide us along the way. She has worked hard to be in all general education classes in 8th grade. Now, she is missing a lot of school to determine the next step with stomach function. We have been told to anticipate another surgery in the very near future. Despite all of her daily struggles, you will see a smile on Hope's face and a determination to go to school whether she just broke a bone or had 4 vials of blood drawn. She is her parents Hero and an inspiration to many.