Lily’s story: New research centre helping Lily enjoy life
The Arthritis Research UK National Experimental Arthritis Treatment Centre for Children is based at Alder Hey and the University of Liverpool. The centre aims to improve the health and wellbeing of children with arthritis and related rheumatic conditions.
Working with the UK’s Paediatric Rheumatology Clinical Studies Group, the centre has identified four priority disease areas: JIA, childhood lupus, JIA–associated uveitis (a potentially serious eye condition that can lead to blindness if untreated) and childhood bone diseases.
Since five year old Lily Whitehead began a new drug trial for her Juvenile Idiopathic Arthritis (JIA) in August 2013, her family can’t believe the improvement.
“We immediately felt that we’d turned a corner,” says Lily’s mum Jane. “It was a big decision to put Lily on these new drugs but I trusted the doctors at Alder Hey and it’s really paid off. Not only has her condition improved but her confidence is so much better now too.”
When her knee’s first swelled up, Lily, then three years old, was unable to walk long distances, and went back into her buggy. “It was lucky she was so young really,” says dad Nick. “We did worry what would happen when she got to five, six or even older. We wouldn’t always be able to carry and push her around.”
Two operations on her knees and ankles initially helped the situation but the family were quickly in the same back in the same situation, with Lily unable to walk at all and struggling to interact with other children.
Jane continues: “Her older sister Daisy would tell us that she’d seen Lily crying or sitting on her own at break times at school. She was so reserved because she knew she just couldn’t join in. It was heart breaking.”
Lily also developed uveitis, an inflammation of the middle layer of the eye that often appears alongside JIA. Initial treatment of the uveitis proved unsuccessful, so the draw of a clinical trial that would help both her eyes and her joints was obvious.
“Although it was a risk, it was one we knew we had to take,” says mum Jane. “If it meant Lily had the chance of a better quality of life it was essential we tried anything we could for our daughter and for other children with arthritis too.”
“The research team are brilliant and coming to Alder Hey is part of Lily’s routine now. The injections don’t bother her so she actually looks forward to coming in to see all the nurses.”
The family are working with Lily’s consultant Dr Gavin Cleary on another innovation in Lily’s treatment and are hoping that Lily will shortly take all of her medication via injection here at Alder Hey.
Jane says: “She is far calmer when she’s taking her medicine at the research facility and with the nurses than when we try and give her tablets at home. We’ve tried putting the tablets inside sweets, crushing it up with food but she just can’t tolerate the taste and she finds it really distressing so the doctors are looking into administering everything here.”
With Lily’s involvement in the trial due to end in January 2015, the family are hopeful that Lily will continue to improve, and that she may eventually grow out of her arthritis.
Jane says: “It’s remarkable how far she’s come since last August, we’re excited that this could be a permanent improvement and we’re delighted we took part in the trial.”
Shortly after her treatment ends Lily and her dad are waving goodbye to the nurses and are off home to Southport where a schedule full of gymnastics and swimming lessons awaits them. Dad Nick says Lily is practising for her 25 metre badge: “These days you can hardly tell she has arthritis at all.”
The new centre will work closely with the pharmaceutical industry and a national network of world-leading research institutions to speed up the development of new treatments for children with arthritis, by running small clinical trials of promising drugs currently in the pipeline that would otherwise take years to come onto the market. They will also collaborate closely with experts in adult arthritis in Liverpool, Newcastle, Glasgow and Oxford, as well as with the NIHR Moorfields Biomedical Research Centre.
Director of the new centre Professor Michael Beresford said: “Children and young people with arthritis and related conditions have been slow to benefit fully from the rapid advances in new treatments that have appeared over the past 10 years. We have the internationally competitive expertise within the new centre to ensure that in future children will be among the first to receive new medicines that are safe and effective and will improve their health, wellbeing and quality of life throughout their lives. We also want to use our understanding of disease and work on what is causing disease and the mechanisms behind it to identify new drug targets, and to look at drug safety.”
The new national centre has been awarded funding of over £1.25 million over five years from a number of sources, including medical research charity Arthritis Research UK, the Alder Hey Children’s Charity, the Alder Hey Research Business Unit, the University of Liverpool’s Institute of Translational Medicine, the University of Sheffield and Sheffield Children’s Hospital, along with Bristol Royal Hospital for Children, who are partner organisations in the Centre.
Clare White, Director of Alder Hey Children’s Charity said: “We are delighted to contribute to what will be a fantastic facility for children and young people with arthritis and related disorders. Alder Hey is already playing a huge role in treating children with these conditions and this National Treatment Centre will play a key role in the future treatment of this disease.”