This is Hazel. Hazel began having seizures at eleven months old. The doctors diagnosed her with complex febrile seizures. A few days after her first birthday, she had a prolonged seizure that lasted over three hours. She was intubated and put in a medically induced coma.
Even after that week of trauma, we still had hope. Hope that it would end and this would just be something that we would look back on. We thought we would take away all that we thought The Lord was teaching us and continue with our lives.
After several days in a coma, Hazel slowly woke up. She looked at my husband and said, “Daddy!” It was as if nothing had happened. She had made a full recovery. She is resilient. Her neurologist at the time suggested blood work. After several more prolonged seizures, 911 calls, EEG’s, hospital stays and new medications, the results were in. A day I will never forget. The day our world flipped - SCN1A positive. Six months later we found a specialist forty minutes from our home at CHOP; what a blessing. He diagnosed Hazel with Dravet syndrome during our first visit.
Hazel is five now. She takes medication six times a day. She loves her family, the color pink and being on the tractor with her daddy! She is homeschooled and has a special teacher just for her that comes to our home for a little extra learning. Our life looks very different to many people. We’re very limited on what we are able to do and most places and events we cannot go to. Illness, heat, over-stimulation, and sunlight are all triggers for Hazel. During the summer months, Hazel isn’t able to go outside at all because of the heat. We avoid Hazel’s triggers every way we can to keep her as seizure-free as possible.
Hazel’s medically fragile journey has made us all appreciate life so much more. We don’t take the little things like a walk outside or a cool rainy day of heat relief for granted. We celebrate all the little moments and count them as huge blessings. Hazel is so incredibly sweet and always, always joyful! Despite all the challenges she faces on a daily basis, she loves her life and is overjoyed just to see her little friends and family even if it’s only for fifteen minutes outside. She truly touches the lives of all those she meets with her big blue eyes and tender spirit!
