Protecting The Future: A Naidex Story

Hi, I'm Gemma and I'm 28 years old. I've had Episodic Ataxia Type 2 since I was 13 months old. That's usually the point where people say ‘poor you,' or look at me with sorrow and pity in their eyes. They don't do it intentionally; it's instinctive as their way of trying to empathise with something they perceive as tragic. However, it's not tragic, it's just the opposite. It makes me want to help children with ataxia be better understood  and to help their parents get the support they need, so they in turn can be better informed and better support their children. I was diagnosed at an incredibly young age; I don't call that a tragedy, I call it a calling.

 Being an Ambassador

I'm lucky to have worked with Ataxia UK for five glorious years on various projects, the most recent being the incredible Naidex weekend: an exceptional exhibition that showcases disability aids and adaptions of every kind. It's myriad of offerings ranges from lightweight active wheelchairs to accessible farming equipment. It was impossible not to be in awe of the surroundings, the buzz and the excitement in the air that felt electrifying and so palpable, you could almost touch it. Everyone was there in that place and moment for one reason: to learn, and that means so much. To take people out from their ordinary lives, where maybe they aren't heard or understood and where they struggle – and take them to a place like Naidex, gives them control, and they can do what they want with it. It's invaluable.

Naidex

Most disability aids and adaptations are aimed at fully grown adults, which of course is important; but where do children fit in when they need those extra bits of kit? That's where Naidex really impressed me. In one of the arenas, I witnessed an amazing sight: kids were being given an ordinary karate tutorial, but the kids were extraordinary; there were amputees using blades, children with Down syndrome, and kids with breathing tubes. Suddenly they weren't outcasts; they were having a great time just being kids.

What really struck a chord with me, though, were the hospital grade cot beds by Centrobed. If you have a disabled baby/toddler, you'll know how much equipment like that is needed. Not only does it raise your child to you and fit all the medical needs and requirements, but they come in cool designs like Star Wars and Disney Princesses. After all, a disabled child is still a child. Another amazing find was the company Safespaces who created a literal safe space within a family’s own home to keep a child or adult safe, while not imposing on their dignity.

The future 

It is a dream of mine to see no child, disability or not, go through the same hardships, discrimination and prejudices that I went through, and events like Naidex are a starting point in that vital change that needs to take place. Everyone has a place in this world; sometimes you just need a guiding hand to find it. As an Ambassador, I’ve found mine.