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Lily Whitehead's story - JIA

Jane and Lily WhiteheadWatching your child in their first sports day will always fill a parent with pride.

But for the Whiteheads that pride could have been bigger than average as six-year-old Lily has battled with severe juvenile idiopathic arthritis (JIA) from an early age.

The youngster from Southport had to miss the sports day in her first year of primary school because her joints were painful and stiff.

Diagnosed at three

Lily was diagnosed with arthritis at the age of three. Her mother Jane said: “One morning she started limping and had a swollen knee.

"A+E thought it was just a bit of inflammation, but it carried on. We took her to the doctor and he said: ‘You'd best go straight to Alder Hey’.

"He thought it might have been an infection, so she actually ended up being in for a week, under orthopaedics.”

Lily was transferred to rheumatology at Alder Hey Children’s NHS Foundation Trust, in Liverpool, in June 2012.

This was a very tough time for Jane and her husband Nick, who have another daughter, Daisy, now 10.

Struggling to walk

Lily’s treatment began the day before she started school in September. “In that time she really deteriorated. She was really struggling to walk,” Jane said.

“I had to pick her out of bed, wheel her to the loo, lift her out and then wheel her back to her bed, she was that bad. We got used to it, but it was tough.

“Then she had the steroid injection and that was instant. The next day she could walk.”

After a course of methotrexate and steroids, Lily started the SYCAMORE trial, a drug trial for an anti-TNF therapy – adalimumab – in summer 2013 at Alder Hey."She had the steroid injection. The next day she could walk."

This research, funded by Arthritis Research UK, is part of important work into how drugs work in children with arthritis and related conditions.

It forms part of the programme of work at the UK’s only Experimental Arthritis Treatment Centre (EATC) for Children that Alder Hey and the University of Liverpool is pioneering along with colleagues in Bristol and Sheffield, in collaboration with colleagues around the country.

Drug trials

Drugs trials in children have previously been limited because of perceived ethical and safety concerns, and commercial reasons.

But European regulations introduced in 2007 have made it mandatory for pharmaceutical companies to test drugs on children as well as adults whenever a new drug is being produced.

This has been driven also by by the desire for better, safer medicines that have been appropriately tested in children.

Jane and Nick had reservations about Lily going on a drug trial at the age of four, but staff at the clinical research facility allayed their fears.

“I was worried about the drugs being pumped into her, but it was the right thing,” Jane said. “We trust the staff here and they know what’s right for her.”"We trust the staff and they know what's right for her."

Jane's delighted with the progress Lily has made, which is plain to see.

Sitting in the ward at Alder Hey, Lily colours in a flower, interacts charmingly with medical staff and appears like a typical, happy, clever young girl.

Outside of the hospital, Lily regularly enjoys swimming and gymnastics. And her family was excited when she joined her classmates for sports day, taking part in running and obstacle races.

Jane said: “It was amazing to see her run around the track. Last year it was upsetting for her as she couldn’t join in. But now she’s very sporty.”

'Fantastic expertise'

Alder Hey Hospital’s Clinical Academic Department of Paediatric Rheumatology has very close links to the adjoining University of Liverpool and its state-of-the-art laboratories within the Institute of Child Health.

Professor Michael Beresford, head of the EATC for Children, explains how this link allows the dedicated and talented laboratory staff to learn more about childhood arthritis:

“There's fantastic expertise in the hospital in looking after children with arthritis and related conditions, and within the university there's huge expertise in research and running safe, child-friendly drug trials. "There's huge expertise in running safe, child-friendly drug trials."

“The EATC for Children is really important in bringing these elements together.

While Lily has clearly benefited from the huge advances made in the centre, her focus is much more on her sports and, importantly, school.

Going to school

“The school has been brilliant,” Jane says. “They've administered eye drops and have been good about her having time off.

“The other kids are great too. They really look out for Lily.“The other kids are great. They really look out for Lily."

“When she has to have her eye drops they'll wiggle their fingers at her to distract her. If she needs to sit down they'll get her a chair.

"They're so matter of fact at that age. They'll say: ‘What’s up with your leg?’ or ‘You're not walking so well today, Lily.’

“And she will say: ‘It’s my arthritis, you know’.

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