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two helium arts volunteers and a participant making art

Jack’s StoryDistance Creates New Connections

Sinead tried to listen, to take it all in. She felt numb with grief. Grief for the future she had imagined for her new family. Grief for the baby whose life would be over almost as soon as it began. Even if they went for open-heart surgery, she knew the odds would be against them.  

That was eight years ago.

Jack’s last operation was a huge success, and he has spent every day since showing the world exactly what he’s made of.

“He never lets it stop him… He’s a picture of health, even though his heart is working harder than anyone’s.” 

His family won’t take a single beat for granted, and when COVID-19 hit, Sinead and her husband knew they would have to shield their son. Faced pressed up against the window, Jack had no choice but to watch from the side-lines. It just wasn’t fair. His friends were allowed to play outside, and he wanted so badly to join them.

“He kept crying, ‘I want to be normal’. I didn’t know what to say. He had to be safe. We had to cocoon ourselves in.”

The mask and Perspex shield on his school desk helped, but it wasn’t enough. It pained Sinead to see her son so cut off from the life he had defied every odd to build. Slowly but surely, Jack’s spark was fading. So she turned to Helium Arts to help keep it burning bright.

Jack had always loved art, and Helium’s workshops were an instant hit. He was a little less sure about ‘Distance Creates’, but once he got going he was hooked. Jack loved sitting at the kitchen table, making things with his mum. He listened with delight as she told him all about her childhood pen-pals. It was such an old-fashioned idea – writing letters! Still, even he had to admit, there was something pretty cool about getting your own post.

“It was a brilliant way to stay connected. Pen-pals and Zoom made it all so real. Seeing other children and being part of a group, it gave him something totally different. It took him away from it all.”

A regular at our Spring, Autumn and Winter programmes, for Jack, one of the highlights was Zooming with the other kids to see what they’d made, and to show off his latest creations. Sinead stands by the door and listens, smiling as Jack chatters away happily. Through Helium, he has found a way to reconnect – not just with other children like him, but with his spark for life. He still misses playing outside of course, but he doesn’t need to spend as much time staring out the window. The road out of COVID 19 might be a long one, but thanks to Helium, Jack and his new friends can shield alone, together.