Ethan, six, loves music and lights and messy play. He also has a rare genetic disorder that means he has frequent seizures.

This is his story, as told by mum Naomi.

We are a normal family with a very precious son. Because of his genetic disorder, Ethan has seizures and is developmentally delayed. He has a feeding tube for the fluids, blended diet and cocktail of medicines that he needs.

But going about ‘normal’ family life is tricky. Ethan’s seizures take over our life. We are like walking zombies most days due to Ethan being up most nights but we try to do it all as a strong family unit. We try to be as normal as we can.

Ethan needs round the clock care and he relies on us fully. We follow a strict routine for his meds, food and physio, and fit in fun in between. Ethan needs lots of moving around to keep him comfortable. We all interact with Ethan in our own ways, surrounding him with the love he needs to feel safe and cared for.

As a family we like to go to the park or eat out and we love to go swimming. It’s an activity which caters for us all. But going out into the world is sometimes challenging. People stare, and I know they’re wondering why we’re in the disabled bay, or why our child needs different access.

The world is still not ready for disabled children and this is disheartening. Ethan is just like everyone else and just wants to be loved so we encourage people to approach us and ask questions. Days out require planning and packing for every eventuality. We always carry rescue medications, pads, clothes, a thermometer, medicines, pain relief, food (blended and dairy free), toys, blankets for changing and more.

While we’re out, finding changing facilities is our biggest struggle. We have to change a large, doubly incontinent child on the floor no matter where we are. Lifting and moving Ethan is hard and requires two of us. It takes a big toll on our backs. Swimming is fun, but the changing is hard. We have to bring extra towels for changing Ethan on the floor. There’s no doubt that more public awareness is needed so that disabled children and their families can be fully catered for and fully integrated into our communities.

As a family with a disabled child, our life is very different. We are constantly running on lack of sleep, dashing to appointments here, there and everywhere, making emergency trips to hospital, giving medicine, and acting as carers rather than parents.

I firmly believe that each child has the right to access the same high standard of health and social care nationwide, no matter who they are. Rehabilitation resources need improvement so that our children can achieve their best, no matter how many barriers are in the way. Ethan has an infectious smile which is always present, no matter what he’s going through. His determination and strength amazes us every day and that’s what gets us through the darkest of days.

This is the part of our life that most people simply do not see.

This is the Secret Life of Us.

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