When Lily Aird went from being an active toddler to one that could barely walk within the space of weeks, her mother knew that something was seriously wrong.
Claire rushed her two-year-old to the doctor and after months of testing and treatment was shocked to be told her daughter had arthritis.
Usually associated with the elderly, Lily had developed a condition which would immediately change her life.
Lily, pictured in her new school uniform left, never complains despite her chronic condition. She was diagnosed at the age of two
Running, playing, dancing, even walking, would be impossible for the little girl unless doctors could find a treatment that would soothe the pain in her knees and hips.
But Claire soon realised that Lily would have to spend years of her life going to and from hospitals and medical practices.
Claire Aird, 32, from Heathfield, East Sussex, said: ‘When I found out she had arthritis I was in complete shock.
‘I just started crying. I was worried that she’d never be able to do the other things normal children do.
‘I thought why is it my child? Her life will revolve around going back and forth to the hospital.’
At first Lily was given large quantities of liquid ibuprofen and cortisone shots to her knees and hips to help numb the pain. But when both only offered temporary relief, doctors realised her condition was more serious than first thought.
They decided the best treatment would be chemotherapy drugs normally used for cancer patients.
Lily was prescribed with methotrexate number of unpleasant side-effects, which include vomiting, hair-thinning, weakening of the nails, and a lowered immune system.
For the first three hours of the day Lily can’t bend her legs at all without her medication and has to be carried
Lily swallows the medication in liquid form, but each time it causes her to be sick, upsets her stomach and leaves her mouth sore. Because the medication lowers her immune system it also makes her susceptible to children’s illnesses and her body weaker at fighting things like chicken pox.
That is because Lily’s juvenile rheumatoid arthritis is caused by an over-active immune system that attacks her joints, as well as protecting her from illnesses.
Around one in 10,000 children aged 16 or under suffer from chronic juvenile rheumatoid arthritis, though it is much rarer among those aged two or under.
There is no cure for the illness, but methotrexate works by stopping the immune system from attacking the joints. But the drawbacks of the medication lowering the immune system means children’s illnesses like chicken pox and whooping cough could be deadly if Lily contracted them.
Doctors have to regularly blood-test Lily to make sure she does not have them and her school also has to warn her parents if any of them are going around.
Claire said: ‘Doctors don’t know how badly chicken pox might affect her, so she has to have blood tests. They’re not nice for a child to have to go through. But the nurses do say she’s very brave about it though.’
Lily (left) enjoys dancing with her younger sister Holly to Gangnam Style, her mother says
Lily will soon start taking the chemotherapy drug by injection, because it makes it more effective.
But rather than complain about the discomfort her medication causes, Lily is more concerned about making sure her youngster sister Holly, who is nearly two, is OK.
‘When you go through the things Lily has been through you have to grow up quickly in a lot of ways.
But you won’t hear Lily complain. She’s more worried about Holly and making sure she’s OK. She’s always looking out for her and they’re always playing together,’ Claire said.
Other treatments Lily takes include large amounts of liquid ibuprofen for flare-ups of her arthritis and regular doses of folic acid.
Lily also has to be carried up stairs by her mother because of the pain it causes, and needs to wrap up to avoid the cold, which worsens her condition.
The ritual of medication-taking is a difficult one both for Lily and her mum, but Claire knows that without it her daughter would not be able to walk and do the things she loves.
‘For the first three hours of the day she can’t bend her legs at all without her medication and has to be carried.
‘She loves to dance. Her and her little sister, Holly, love to dance to Gangnam Style, but without the treatment she couldn’t dance at all. There’s no way.’
For the next 10 years much of Lily’s life will be spent travelling to and from hospital for treatment.
It is not known whether she will suffer from the condition for the rest of her life or make a recovery, though the odds are in Lily’s favour.
There is no medical cure, but around 75 per cent of children are expected to recover from the illness before they are adults.
Claire added: ‘Lily always takes it in her stride. We have a few tears but she always been ever so good with it.’