Gray was born at 31 weeks gestation. She spent a month and half in the NICU at KGH, followed by 1 week on the pediatric unit. While in the NICU, Gray developed a condition called Necrotizing Enterocolitis which put her at high risk for Sepsis. After 14 days of no food, PICC lines, TPN, IV Fluids, X-rays and ultrasounds Gray seemed to be doing much better. We had finally discovered that the culprit of the NEC was a major allergy to Dairy Protein and Soy. Once Gray got home on special formula, we had a fantastic few months of thriving and hitting milestones.
Fast forward to 8 months old and we started to notice that Gray seemed to be “daydreaming” several times a day. We didn’t think much of it and brushed it off as typical baby behaviour. We started to get more concerned when we noticed that she was not easily brought out of these 30 second stares. Heading in to a doctors appointment at 10 months I had woken her up in the car seat and Gray started to roll her eyes and shake. Very much concerned our doctor sent her get an EEG which to our surprise showed that she was having several seizures within a 20-minute span. Many unnoticeable to the naked eye.
Gray has just recently got the official diagnosis of Focal Cortical Dysplasia. She is now on two high doses of medications but has at least 2 seizures a day still.
As we await the next steps in her treatment, we want to focus on raising awareness to those who are unfamiliar with Epilepsy. Being an advocate for those that don’t have a voice. The Walk for Epilepsy is a fantastic opportunity to join family, friends, and the public to learn about how this condition effects those living with it and caregivers. Knowledge is power!
Gray is now currently 16 months old and is a happy happy baby! She has been a warrior since day one of her life and I look forward to seeing the mountains she will climb in life. With her family by her side, anything is possible!
For Madison’s Walk for Epilepsy, she has organized a 4km walk for friends and family! To support this amazing team visit: https://www.canadahelps.org/en/charities/the-epilepsy-seizure-disorder-resource-centre/p2p/walkforepilepsy/