Project Description

Brenna’s Story

Brenna Fox is a 7-year old little girl who loves Disney princesses and everything Thomas the train. Brenna also lives with Dravet Syndrome, which is a rare and catastrophic form of intractable epilepsy. She had her first seizure when she was only 7 months old. Since that time we have watched Brenna have over 140 convulsive seizures. When she was about 2 years old she started having absence seizures. She currently takes 3 anti-seizure medications and still suffers dozens of absence seizures every day and unpredictable convulsive seizures. We have tried every medication available and a special diet without success. At times it seems the side effects of some of the medications are worse than the seizures themselves. We have had to watch her go through countless doctor visits, tests, blood work, procedures and hospital stays. We almost lost her when she was 3 years old of acute pancreatitis due to a rare side effect of one of her anti seizure meds.

Through all of this Brenna is still an unbelievably happy and spirited child. She loves living in Stony Creek surrounded by family and friends, the new playground and our little beach. She seems to have learned to compensate for all of the other challenges that come along with Dravet Syndrome: behavioral and developmental delays, balance and coordination issues, orthopedic and gait issues, difficulty with fine motor skills, apraxia of speech and significant expressive language impairment, low muscle tone and decreased stamina. She receives amazing support from the staff at her Elementary School here in Branford. Her educational team is incredible.

Brenna will never outgrow her seizures and she will most likely require care throughout the rest of her life. Providing care for a child with a disability is extremely difficult, sometimes heartbreaking, other times frustrating, especially when your child cannot express their needs and feelings. We are always on the alert for potential seizure triggers (illness, certain lights, being over-tired, hotter temperatures). This limits Brenna’s social activities and the ability to travel for family vacations. Date night is limited to 1 or 2 nights a year and we always make sure that we are back in time to administer her meds and get her into bed. We use a baby monitor every night.
Her father works hard as a store manager for Stop & Shop so that her mother can be a stay-at-home mom to care for Brenna. Brenna has taught us so much since she has come into this world and we love her more than any words could ever express. She consistently amazes us through her progress, resiliency and her spunk. Life is challenging, but we get through each day the best we can with Brenna’s smile, laughter and love.