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.
Saoirse clicked refresh one more time. She couldn’t wait. It was Sunday, and that meant a new art project was about to hit the family inbox. She had loved everything Helium Arts had sent so far, but dressing up as a milkmaid was a definite highlight. Her mum, Sheila, thought it was hilarious – watching her and her sister get the angle of Vermeer’s jug exactly right.
Paul didn’t know you could use a salad spinner to paint pictures. He dripped in the colours, put on the lid, and gave it three spins. It was amazing! Paint splatters and patterns danced across his paper plate. He was definitely taking this one home to show mum.
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.
When he arrived at Helium Arts, all Tom wanted to do was go home. But we always make sure our spaces are safe, and that paramedics – and parents – are nearby. It worked. For the first time, Tom had somewhere he could go and just be Tom. He wasn’t the boy with allergies here.
Aisling held out the beaker for more. It had only taken a few minutes to drain it dry, but she was still so thirsty. Her mum looked down at the empty cup in her two-year-old daughter’s hands. All the signs were there. This wasn’t a bed-time delaying tactic. Her perfect little girl had Type 1 diabetes.
Over the past nine years, 17 year old Shannon has experienced the difficulties of living with a chronic illness while trying to going about her everyday life. At the age of eight, Shannon had her first seizure. At the hospital, she was diagnosed with temporal lobe epilepsy. She describes her seizures as the ‘funny feelings’.
In an instant, Lauren went from being a normal kid to having to go to the hospital three times a week for dialysis.
In 2017, Helium Arts’ Pop Up Picnic visited family homes in Kildare, bringing a sprinkling of joy, creativity and play to young children with complex needs. One of those children was Ailís, who was born with a rare genetic disorder and has both complex intellectual and physical needs.
Stephen enjoyed his day-to-day life like every child, until he got his first seizure at 13 years old. A short while later, he experienced a second seizure and was diagnosed with epilepsy.
Sophia is 14. This year Sophia participated in a Helium Arts’ project, bringing together a group of teenagers over the course of 2018 for artmaking workshops in partnership with Epilepsy Ireland. The group Sophia worked with all have epilepsy, many with additional needs. They called themselves Electric Feathers.