DJ’s Story: creating new conversations
There aren’t many 8 year olds who know the words ‘Bardet-Biedl Syndrome’. DJ does. They are the reason he has so many seizures, and why the doctors keep testing his eyes. He knows he is going blind. But it was a long time before he was able to say the words out loud.
DJ didn’t like to complain or talk about his condition. He would rather just get on with things – clearing floors so he wouldn’t trip. Sticking to adults, so that other children wouldn’t know how different he really was. It was hard, but as more people learned what Bardet-Biedl syndrome meant, it got easier for DJ to make friends. If only everyone was so understanding.
“I knew something was wrong, but DJ wouldn’t tell me anything. I think I spent six months crying. And trying not to cry in front of him. It was my nephew who finally told me he was being bullied.”
It broke his mum’s heart to see her son pulling away from everything he had built. Slowly but surely, his world was closing up – full of things he couldn’t see and words he could not say. She tried everything she could to spark his interest and reconnect with her little boy. Nothing worked.
Until he met the team at Helium Arts.
From the moment the first workshop ended, DJ couldn’t stop talking about it. The things he made, the jokes people told, the friends he met. He knew he was different. But these children were different too, and that made everything so much better.
“One day he was up at 10am going ‘Can I go now? Can I go now?’ and we were all like, ‘No you have to wait!’. He was so excited. It was such a relief.”
At first his mum thought she was imagining it. But other people noticed too. DJ was opening up, and not just about art class. With Helium, he found the connections and confidence he needed to say the words he had kept hidden for so long.
“He’s coming back out of his shell. He’s in a better place to talk about the syndrome and more curious about what’s involved. He wants to know more.”
He told his mum he knew about his eyes, and that he was going blind.
It was an important conversation to have. DJ is only at the start of his journey, but with the help of Helium Arts he has found a way to start processing what Bardet-Biedl syndrome really means.
“It was amazing to see him change. It has given us all the reassurance that he can do well in life. Finally, we can start looking forward.”
Thanks to Helium Arts, DJ is ready to take the next step.