Zac was born seemingly healthy in 2016. However, in December 2016 Zac was unresponsive when I got him out of his cot that morning. He was rushed to hospital where he was put in an induced coma and on a ventilator as he was in status and had been for several hours. One of his lungs collapsed as had his veins so doctors had to inject him through the bone to attempt to stop the seizure. Zac then had 2 more status seizures within the next 6 weeks at which point Dravet Syndrome was first raised with us. He had some genetic testing done which came back positive for the SCN1A mutation which explains his life threatening seizures. From that point onwards Zac was put on epilepsy medication which he continues to take every 12 hours.
Unfortunately, this genetic mutation also comes with co-morbidities and Zac was diagnosed at 4 years old with autism with a significant avoidant profile and significant sensory processing disorder. A few months ago he was also diagnosed with ADHD, severe anxiety, trauma and dyspraxia.
Even though Zac has a very challenging day to day life, overall he is a happy little boy especially when he is playing on the beach with his dog, Lexi.