Jon Kennedy is one of our loan officers in Moore, OK. In 2007, he and his wife were blessed with their second child, a daughter, Graceyn. She was delivered via emergency C-section, early in the morning. Shortly after her birth, her hospital hearing tests were failed in her left ear. A few weeks later, they learned she was in fact, deaf in her left ear. After a few months, they began noticing she didn’t move her left arm or leg like her right.
This led them to seek further medical advice. Following a Neurology appt, they had an MRI which returned unexpected results. Graceyn had a brain disorder called lissencephaly. This was possibly caused by cytomegalovirus it CMV. This was the primary cause of her hearing loss as well as her new diagnosis of hemiplegic cerebral palsy.
At age 5, Graceyn began having seizures and their new adventure with epilepsy began. After years of failed medications and seizures lasting sometimes 15-20 minutes, they were referred to Texas Children’s Hospital in Houston. A series of tests were performed for her to have a hemispherectomy. This procedure involves removing the area of her brain believed to be the location seizures were starting. Following the tests, they learned she would not be a candidate due to the seizures not being localized and occurring in all 4 hemispheres.
They were then referred to a surgeon to have a Vigus Nerve Stimulator or VNS placed. This device acts as a pacemaker for the heart, but for the brain. It detects seizures based on an increase in heart rate and sends a signal to stop a seizure before it occurred. This was placed in July 2016. Seizures still occurred and mostly at night. This left them unable to sleep most nights, having to be constantly vigilant for seizures. Soon after, the family began fundraising for a seizure alert dog.
Graceyn is the biggest Disney fan we know. When they traveled to Florida in early 2017 to meet her new companion, she used her love of these movies to come up with a creative name for him. The movie Tangled is one of her favorites When asked what to name him, she chose Flynn Rider. In the movie, Flynn guides Rapunzel, the lost princess, on a series of adventures and eventually to see her dreams come true! The name was SO fitting! The moment Graceyn and Flynn’s eyes met, they bonded. He is a grey standard poodle and amazes his family every day with his intelligence and ability to help care for Graceyn.
Flynn has been able to alert us for her seizures successfully and they have become the best of friends. He travels all over with her, from going places to receive treatment, to adventures with her family.
Please see our Facebook page “The Tangled Adventures of Graceyn and Flynn” to continue following our story!