Adam Aherne was just two-and-a-half when he got out of bed one morning and found he was no longer able to walk. "He was a lively little boy," his mother, Christine, recalls now. "Then, one morning, he wasn't able to put his leg under him. For a few weeks, every morning he would get out of the bed, land on the floor and push himself along on his bum, across the landing to knock on the door of our bedroom because he couldn't reach the handle."
His parents, from Cappamore, Co Limerick, brought him to their local GP, who advised the couple to take him to University Hospital Limerick.
There followed several weeks without a diagnosis, until their helpful family GP recommended that Christine ask her own rheumatologist, who she had attended for some time for rheumatoid arthritis. Although part of adult services, he agreed immediately to see the little boy, and Adam was soon afterwards diagnosed with lupus rheumatoid arthritis - a condition where the symptoms present as inflammation of the joints.
The swelling was brought under control with steroid injections, and, within a month, Adam could walk again. The morning after the steroid injection, Christine remembers with a laugh her son's joy upon waking. "He woke up and said 'mam, my legs work!' And he was running about, oh my God he destroyed the house, himself and his older brother. But I just let them to it."
A six-month wait to see a paediatric consultant in Temple Street then followed. Christine recalls how the letter for an appointment to see the same consultant through the public system (she had applied through both public and private) did not arrive for a further year.
It then took about two-and-a-half years to get Adam's medication right, which helped the situation to settle somewhat, Christine explains.
However, Adam experiences ongoing issues. "Every time he grows, the joints inflame," his mother says. "He seizes up at night. Or I can see it when he comes out of school. If he's sitting too long, he'll come out of school hunched over like an old man just missing the walking stick. At the moment, he hasn't been writing for the last couple of weeks in school because the knuckles are swollen on his right hand, and his knee is swollen."
Aged five, Adam developed uveitis, an inflammation at the back of the eye which affected his vision. Initially, hourly drops were required, meaning Christine has to make repeated trips to Adam's school. Eventually over a few weeks, the doses would be weaned down. Several months later, the condition would flare up again. This went on for about six years.
"He could wake up in the middle of the night, and he'd be sore. And he couldn't understand why he was sore. He was never able to express what pain was. Whereas now, he's 11, he can go in now and has great ownership over his own situation," Christine says. "He can sit down with our GP and say 'this is swollen, I can't do this because of it. I'm not able to write, or to play with the boys outside, I get too tired'. He explains it all. You feel so proud of him now. He's so articulate."
Adam is severely dyslexic, meaning his comprehension can operate at a different speed than his classmates, his mother explains. All of this compounds to create, at times, feelings of occasional isolation from his peers.
In the last year, however, he had been attending workshops run by Helium Arts, the National Children's Arts and Health Charity, which have rendered a massive positive change in his situation, his mother explains.
"When Adam was diagnosed, there was nothing for children with arthritis," Christine recalls now. "I knew no other children with the same condition. There was very little with Arthritis Ireland for children." Eventually through iCAN, the Irish Children's Arthritis Network, Christine discovered Helium Arts.
Attending Helium Arts' workshops has had a hugely positive affect on Adam's confidence.
"The difference is unbelievable," Christine says. "He's more and more relaxed with the fact that if he's not able to do something, there's lots of other children there with him. He knows they're all in schools around the city, and they're in the same position. It's the fact that he's not alone. That are other children experiencing the same thing."
The benefits can also be seen in his school life: "Being at the same level as his peers socially is a big thing he wants for himself. In the beginning, he didn't want anyone knowing that he had arthritis," his mother explains. "I said 'sometimes Adam, your friends, they'll help you'. Now he comes home school and says 'mam, one of the guys did all my writing for me today'. The guys in the class, they know he can be slower, so they'll pick up the pen and write the sentences for him. The camaraderie is just unbelievable. By letting them know earlier, the support he has now; they don't even blink."
Established in 2010, Helium Arts is supported by the Arts Council, and Creative Ireland.
"We support children living with long-term health conditions through the arts, to promote their creativity and well-being," explains Helene Hugel of Helium.
"There are about 120,000 children in this country living with long-term health conditions. Research points to the fact that they feel lonely and socially isolated," she explains. "A lot of these children, because of their conditions, will feel very different, and stigmatised. They will have less friends, and less closer friends. They miss out on the everyday activities and occasions where they could actually build friendships. Research shows they experience a lot more bullying. Sometimes they may not have the energy to participate. Particularly boys, who don't have the energy to play sports - where is their friendship circle, when all the other boys are playing sports?"
As well as camps during school holidays, Helium Arts run weekly workshops on Saturdays, with children from the ages of six to 18. All events have medical support in the form of a nurse or an advanced paramedic present.
His time with Helium Arts has had both physical and mental benefits for Adam. "Adam needs mobility. With the drawing and painting, you're using your hands without even realising you're using them," Christine reflects. "They were in the Limerick Gallery of Art recently. He ran out of the first class afterwards and said 'mammy, it is the best class ever'."
Adam has met people living near him, lessening his sense of isolation. "He said 'mam, I'm after meeting someone who lives nearby'. We'd never have known she was there. He's able to go in and meet the children.
"They're all lovely, they're all creating, so they're all able to do the same work. He's not seeing somebody miles ahead of him who he is not able to keep up with. In school, he knows he has to hold a pen and he sees it as work. Whereas in Helium, it's more about fun and enjoyment. But what they learn is just unbelievable."
After the class tried graffiti last year, Adam's mother laughingly recounts how she let him continue his work on his bedroom wall when he got home.
Most importantly though, Adam's time with Helium Arts benefits his overall mental wellbeing. "It's very calming," Christine explains. "And it also keeps the mind active. It zones in your mind. Being dyslexic, the brain is on overdrive. With the art now, you can see he's completely slowed down. There's no rush. He'll do half a picture, and he knows he has to wait for the paint to dry, and he'll come back later. It's not that rush, and that panic in doing things. Not since this."
Helene Hugel will be speaking at 'Vitamin C: Creativity and its Role in Mental Wellbeing A Creative Conversation' at Royal College of Surgeons in Ireland, Dublin 2. Event runs from 11:30 - 14:30, 12th March 2020. Tickets are free, but please register at eventbrite.com, Helium.ie or firstname.lastname@example.org