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’.

In an instant, Lauren went from being a normal kid to having to go to the hospital three times a week for dialysis. It all started in February 2013. Lauren hadn’t been feeling very well for a few months and her family decided to take her to the doctor. The next day she was diagnosed with renal failure and put on an organ transplant waiting list. While waiting for a kidney transplant, Lauren had to travel to the hospital every Monday, Wednesday, and Friday for dialysis, which meant she didn’t attend a full week of school for 15 months.

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. Through the project, Ailís had the opportunity to enjoy multi-sensory performances while bonding with her mother, Eithne.

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. Stephen had been bullied by other children before his diagnosis and he found it hard to be open about his condition because it made the bullying worse.