When three-year-old Liam Brooks cried out in agony in the night, his mother didn't know where to turn. The diagnosis, when it came, was shocking.
What if you heard your three-year-old toddler crying in the night, but realised that he couldn't come running to your warm bed for a snuggle because his feet hurt too much?
When Jodi Brooks found her little boy Liam standing by his bed, too sore to walk the few feet across the landing to her bedroom, she already knew there was something wrong but she didn't have a name for it.
At other times, the usually energetic youngster would want to be carried, at an age when most toddlers are struggling to get out of the buggy and test their independence. Aged two, he would tell his mum he had an "ow-ie", baby speak for something that hurt.
First his ankles became sore and he didn't want to walk even short distances. A physiotherapist diagnosed flat feet and he wore insoles in his shoes and the problem seemed to resolve itself.
Then his knee swelled up and was hot to the touch. A doctor suggested a possible injury from play.
Then one day, he complained of a sore wrist and simply stopped using his left hand. He wouldn't pick up a fork or use it in play.
For almost a year, the family had searched desperately for the cause of Liam's symptoms and each time, x-rays came back clear. Finally Jodi took him to a private physiotherapist.
She listened to his history and immediately asked if he had ever had blood tests. "What we told her raised a red flag for her straight away," said Jodi. The results came back positive for juvenile arthritis, an auto-immune condition which means the body's own defence system attacks itself.
About 1,000 children in Ireland are affected by it, many of them living with severe pain on a daily basis, which imposes limits on the sports they can play, how active they can be and even the amount of school work they are able for.
For the Brooks family, Liam's diagnosis brought both relief, that they finally knew what was wrong with him, and a whole new world of worry about what the future would hold.
The family's GP told Jodi that he probably has a very high pain threshold. "It's because he has always had some pain so he finds it normal," says Jodi, who was deeply upset by this information. "To think that he had gone through a whole year with this."
When Liam's blood results showed extremely high inflammation around his joints, the family were referred to Dr Orla Killeen, a consultant paediatric rheumatologist at Our Lady's Hospital for Children Crumlin, where he was started on a course of steroidal injections in April.
Like most parents of children diagnosed with juvenile arthritis, Jodi and her husband Darren had never heard of it. Arthritis was a disease suffered by the elderly, not a healthy boy like Liam.
"Never in all my days had I heard of a child with arthritis. Of course, we looked up the internet and we found Arthritis Ireland where we got an explanation in layman's terms of what it was."
As soon as the injections took effect, Liam improved. "It was fantastic, the difference in him was there to see," says Jodi.
Now he wears a support on his wrist and has physio to increase the mobility in his joints although all the exercises have to carried out through play. He also gets injections of a drug called Methotrexate, which is usually used for cancer patients.
The drug effectively lowers his immune system to prevent it attacking his joints but the dose must be administered carefully so he still has some natural fight against the usual childhood infections.
"It is such a scary drug to be putting into your child every week," says Jodi, who found that some of her fears were calmed through the parent-to-parent network at Arthritis Ireland.
"It was an absolute Godsend for us. We really wanted to know that it wasn't just us and it is scary not knowing what is ahead for your child."
Through Arthritis Ireland, Jodi and her family, who live in Ashbourne, Co Meath, have met some teenagers who are living with juvenile arthritis. "They were so confident and happy. I just don't want arthritis to define Liam. I know it will hold him back in some areas."
He is already an avid footballer. But Jodi is hoping to encourage him at swimming which is easier on the joints.
The family have found that they need to parent Liam's older brother Dylan (10) differently so that he is included in caring for Liam and doesn't feel left out.
"He is so protective of Liam and of course Liam looks up to him.
"We don't really plan our activities now. We wait and see how he is on the day". The drug tires Liam out and typically of those with Juvenile Arthritis, he finds the mornings more difficult.
"He looks perfect but there is a fight going on inside his body. Sometimes he cries in pain in the night."
Fortunately Liam is blessed with a happy, confident demeanour and the carers at his play school have told Jodi he won't ever allow himself to be left out.
But she worries about how he will cope with school when he starts in September 2014 and how his compromised immune system will respond to the usual bout of winter colds and other classroom infections.
For now, she is determined to "just get on with it" and to follow some advice another parent posted on the AI website.
"Your plan as a parent is to teach your child about the world but as a parent of a child with juvenile arthritis, you have to teach the world about your child."
During September Arthritis Ireland works to raise awareness of Juvenile Arthritis by encouraging transition year students and businesses to sell Jasper pins, which depict a cartoon super hero.
To order pins, contact firstname.lastname@example.org or to donate to help young people with Juvenile Arthritis, go to arthritisireland.ie