Allergies were part of Tom’s* life from Day 1. First it was breastmilk, but that was just the start of his journey. The list got longer and the reactions more severe. His mum will never forget how it felt to watch her son go into anaphylactic shock. It was his first birthday. He had an allergic reaction to the cake.

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.

Spinning confidence and creativity with Helium Arts. 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.

A creative flair that lit up lockdown. 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.

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.

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. We talked to Sophia’s mother Sharon who told us how getting involved in Helium’s project helped her daughter.

Redefining diabetes. 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.

At the age of eight, Shannon had her first seizure. Since then, Shannon has experienced the difficulties of living with a chronic illness while trying to going about her everyday life. At the hospital, she was diagnosed with temporal lobe epilepsy. She describes her seizures as the ‘funny feelings’.