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Brave Newport boy says ‘Yes iCAN’

Nurturing

TOUGH STUFF Dylan Hastings (7) was diagnosed with juvenile idiopathic arthritis as a toddler. Pic: Conor McKeown

Interview
Ger Flanagan

Five years ago, Diana and Gary Hastings were given the life-changing news that their then two-year-old son, Dylan, was suffering from juvenile idiopathic arthritis (JIA).
This came as a shock for the Newport couple, as they, like many, had assumed that arthritis was a rheumatology disease that primarily affected elderly people – which is correct, to a certain degree.
Juvenile idiopathic arthritis (‘idiopathic’ meaning the cause is unknown) differs from adult-onset arthritis in that it is caused by the immune system attacking the body’s joints, and it can arise out of the blue, as in Dylan’s case.
The couple had first noticed a swelling on Dylan’s wrist, and they decided to bring him to see a doctor. From there, Diana reveals, things unfolded very quickly.
“After we brought him to the doctor, he just told us to just keep an eye on it incase it would keep swelling or in case he would bang it off something,” she told The Mayo News.
“Within a week, his other wrist started swelling too, so our doctor booked him for all the tests straight away. By the end of the week he told us that it was juvenile idiopathic arthritis and that he was sending us to Dublin to see a specialist straight away.
“It was a shock, because at the time we didn’t know anything, you just get a leaflet and that is it, and you’re like ‘Oh God’.”
There are various treatments and therapies for JIA that help control symptoms and reduce the risk of joint damage, but the combinations of these vary depending on the child and their particular requirements. In the early stages, higher doses of medicines may be used to get the condition under control.
Diana recalls how difficult this was for both parent and child. “They tried him on medication first, and within the first two weeks it didn’t work … he got really sick and couldn’t eat,” she says.
“So your son is not even three, and he is on really strong medication that they have to order into the chemist, and then when that doesn’t work you have to go to Dublin to get joint injections. They [injections] are so painful that they have to knock the children out … It was a really worrying time.”
Five years on, the condition, which is estimated to affect over ,1000 children in Ireland, is still having a major impact on the lives of the Hastings family.
“Day to day, Dylan can’t walk far, and because it is an auto-immune condition, he picks things up a lot quicker. About a year-and-a-half ago, I think he was sick like every four weeks with his chest; he would just recover and he would be off the medication and then he would have to go straight back on.
“It is tough on him because he knows if we go to a party or an event and he is up late or just running around I will have to massage him and heat him up before he goes to bed because he will be up all night screaming in pain.
“I always think children with juvenile arthritis are so tough. They are prodded and poked. Dylan doesn’t cry or complain, he just takes it.”

Spreading awareness
Here in Ireland, the only specialist service available to children that suffer from rheumatology conditions is located in Dublin. This means that something as simple as a ten-minute appointment can turn out to be an exhausting journey for Dylan. But with no other options available, Diana says they have no choice.
It is this lack of services and indeed the lack of information that is available to parents whose kids suffer from JIA that has motivated Diana to get involved with the charity iCAN (Irish Children’s Arthritis Network).
iCAN is a parent-run network that was formed two years ago and one that provides support, information and advocates for the best care possible for those affected by juvenile arthritis. And as Ireland has the second worst rate of care for children with arthritis in Europe at the minute, Diana is passionate about the benefits that iCAN brings.
“Our main goal is to raise awareness and to get better services here in Ireland,” she explains.
“It [iCAN] was originally started as a parent forum, and in the last year it has really come  good, as one of our main sponsors is Shannon Airport (part of the Shannon Group Charities of the Year 2016).
“Now we have family fun days where specialist speakers, such as doctors and physios, come in and talk, and this has really helped because I wouldn’t have known any of this stuff otherwise.”
Diana urges other parents to seek help straight away if they notice any symptoms in their children, as far too frequently, parents may delay due to a lack of knowledge about the condition.
“You get the comments like ‘It’s just wear and tear’ and ‘He’s too young’, but it is very different [to adult onset-arthritis], as it is auto immune. We really need to raise awareness about this because the children need help. There are lots of little things that people don’t realise. They think it’s just about the joints, but it’s the whole body too. Dylan has to have regular three-monthly eye check-ups, for example, because they can inflame too because of the condition,” she explained.
“There has to be more Mayo people out there that do not know of this charity and they might not know anything about the condition. But there is this support!”

For more information, visit iCAN’s website,
www.icanireland.ie, or find iCAN on Facebook.

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