Wesley had his first seizure at 4 months old, June 10, 2019. It lasted for over an hour. We had just moved into our apartment and he had his 4 month immunizations that day. We were told it was a one time occurrence so we moved on with our life after that seizure. Two months later, August 4, he suffered from another seizure that lasted even longer, and there wasn’t a rhyme or reason. After that he continued to have seizures with illnesses & also without which prompted some genetic testing. The genetic tests finally gave us answers. Wesley was diagnosed with Dravet syndrome at 8 months old.
We remember that day & the words. The doctor told us “write this down, and research it. We will talk about it at the next appointment.” He told us Wesley will never be or do what “normal kids do”, that he may never walk or talk, and that he may not live past 5 years old or he may live longer but he will not live past teenage years. Everything was very uncertain with that diagnosis, he said. Hearing him say those words made our world freeze. We had brought home a perfectly healthy baby from the hospital 8 months prior so to hear those words was sickening. We did not know what to expect for the future of your child.
By the time Wesley turned 1 year old he had been hospitalized 7 times with countless ER visits and many ambulance rides. We begged doctors to give us appointments and answers. We were dismissed by many doctors when we lived in South Florida, where it all started. We gave up on Florida and packed everything up we had and drove to North Carolina where we have been since March 2020. This is to prove we would do anything for Wesley. We continue to research everything we possibly could to help Wesley. We told ourselves we would never stop advocating for him and be his voice when he doesn’t have one.
Today Wesley is 5 years old and he turns 6 in February. He plays baseball, football, and he loves trains. He rides his bike and rides a four wheeler. He has a love for life and laughing. Wesley is the funniest person he knows. Everyone around him feels the joy he brings. Wesley lights up any room he enters with his loving personality and to know him is to love him. He’s so happy despite the every day battle he has with his seizures. Wesley is our reason why.
