Meet Hailey and her brave family. Is she not the cutest little girl you’ve ever seen? Her story is yet another example of not judging a book by its cover. This 7-year-old suffers, on so many levels, but you’d never know it from these adorable images.
Hailey is not her diagnosis. She is sweet, friendly, and lovable. She is resilient, daring and courageous. She is love.
Behind her innocent eyes is a relentless case of Uncontrolled Epilepsy. She is considered high risk for SUDEP (Sudden Unexplained Death in Epilepsy is a mysterious, rare condition). Hailey is considered Developmentally Delayed, has ADHD, and Hypoxia (a condition in which the body or a region of the body is deprived of adequate oxygen supply) with seizures.
Hailey is no longer a neurosurgical candidate; she has survived two neurosurgeries and most recently Vagus Nerve Stimulator (similar to a pacemaker, VNS is a small device implanted under the skin – it is programed to produce weak electrical signals that travel along the Vagus nerve to your brain at regular intervals. These signals should help prevent the electrical bursts in the brain that cause seizures). Hailey also acquired a Seizure Response puppy-in-training named Copper to help alert for seizures.
Her family has not taken any group photos in years and feels blessed to have this opportunity to share their story. What’s more, her Mother does not take pity on their challenging situation — on the contrary she says the condition gives her purpose to fight for her daughter and all those living with Epilepsy. “Hailey is my most amazing accomplishment,” she said.
Thank you to Kristin Celestina of www.kristincelestina.com for donating her time and talent to Hailey and her family.