Two-year-old Zayden of the Sunshine Coast was just three weeks old when his mum, Adele, noticed some things weren’t quite right – he’d been having issues eating, and his eyes were flickering. Two years, and many different appointments, doctors, and hospitals later, Zayden is still living with an undiagnosed neurological movement disorder, that consists of epilepsy, restricted movement, abnormal eye movements, some visual impairment, central hypotonia, developmental delays and feeding difficulties.
“It never even occurred to us at the time that there was even such a thing as undiagnosed. In the past, we had always gone to doctors, and those doctors had answers. Despite everyone’s absolute best efforts, Zayden is still “undiagnosed”. We certainly haven’t given up looking, but we have become more comfortable with undiagnosed, and try not to let it control our lives,” Adele said.
“No diagnosis means no limits. If we don’t even know what Zayden has, then how can we possibly predict what he is capable of?”
Adele describes Zayden’s condition as “like Parkinson’s” when people ask.
“It’s the movement disorder that most people know. I say that he can understand what’s going on, but he has no control over his body.”
While they still hope for a diagnosis one day, Adele tries to make Zayden’s life as much like other kids his age as possible. He loves music, playing, being spoken to, and moving – or in Adele’s words – having someone move him.
“Zayden is a rock star. He’s a warrior – a truly inspirational little guy that fights every single day. He has a smile that lights up the room, and his smile puts everything into perspective – especially when I know how much he has fought to get his body to smile. His little mouth even quivers some days as he is trying so hard to control the muscles.”
Although Adele is now at peace with Zayden’s health journey, her own journey to feel comfortable with the unfamiliarity of Zayden’s life didn’t happen overnight.
“With time, we’ve learned to believe in the impossible. We’ve learned a new normal, where tubes, needles neurologists, hospital visits, seizures, and therapy are all just a part of life. We’ve learned there are so many things out of our control. We’ve learned not to worry so much about the future. We’ve learned that happiness comes in so many forms, and this little guy makes us so so happy.”
So, what would she tell other parents who might still be waiting on that diagnosis?
“Don’t give up. There are so many days when it may seem hopeless, but hope could be just around the corner. Celebrate every success. Forget about the standard milestones, and create your own.”