November charity news – Liverpool children’s health research centre
“We need to find safer treatments”
Sharon White, 43, from Flintshire, explains why research into children’s health conditions is vital
When Sharon’s son Lewis complained of a headache last July, she didn’t think it was anything serious. “Lewis had picked up a virus the week before so had been feeling a bit unwell. He had an afternoon nap and I presumed he would sleep it off.”
However, when Lewis woke up a short while later, Sharon immediately knew something was wrong. “I noticed one side of his face was dropping and he couldn’t hold up his right arm. Terrified, I drove him to the local A&E, where we were whisked through to an intensive care room on the children’s ward.”
Lewis was given a variety of tests – including a CT, MRI and ultrasound scan – which confirmed he had a stroke. “We were shocked. We never dreamed this would happen to our seven-year-old son.”
The next day Lewis was taken by ambulance to Alder Hey Hospital in Liverpool. “Lewis was in a bad way – he couldn’t talk and didn’t know who I was”.
Lewis and Sharon stayed on the neurological ward for two months as the staff worked on his rehabilitation. “In the first few days he had to have a catheter and be fed by a tube, then he started receiving hydrotherapy, physiotherapy, occupational therapy and speech therapy and attending the school on the brain injury ward.”
The doctors also performed a series of tests on Lewis, which suggested there may have been an underlying condition. “Lewis had acquired a brain injury but his MRI showed up something else on his brain they weren’t sure of.”
The doctors ordered more tests, which showed antiphospholipid antibodies – which may increase risks of blood clots – in Lewis’s blood.
“We felt like we had gone one step forward only to go two steps back. Lewis was still recovering from his stroke but now had to start treatment for something else,” says Sharon. “Fortunately, Lewis is a very strong character and from day one was determined to get better.”
Since leaving the hospital last September, Lewis has come on in leaps and bounds. “He was in a wheelchair for a long time but can now walk again and ride a bike, and he has got back his speech and the use of his right arm. He is also back at school full time.”
In February, further tests diagnosed Lewis with Polyarteritis Nodosa (PAN), a type of vasculitis that leads to inflammation of the small blood vessels due to an overactive immune response.
In March, Sharon and her husband were approached by Alder Hey Hospital to see if Lewis would take part in a clinical research trial for Great Ormond Street Hospital.
“There are currently two treatments for the condition, so they want to monitor him and assess the benefits of high dose steroids and cyclophosphamide, which Lewis is receiving, against the other treatment, so they can find the best option for children in the future.”
In a bid to develop safer and improved treatments for young patients, the University
of Liverpool are fundraising for a new £25 million facility that will give every child cared for at Alder Hey Hospital the opportunity to participate in potentially life-saving clinical trials.
“Research like this is so important. The more information they have, the better facilities and medicines they will have to offer children in future”.
Liverpool children’s hospital’s research and education centre – THE FACTS
- Children are among the most frequent users of healthcare in the UK. However, many of the medicines used to treat conditions have not been properly developed.
- Requirements by the European Regulation on Better Medicines for Children have led to an increase in the number of clinical studies conducted in paediatrics.
- The University of Liverpool are fundraising for a new £25 million facility that will give every child at Alder Hey Hospital, Merseyside, the opportunity to participate in clinical trials, to help develop safer treatments.
BIG GIVE UPDATE
Between March and May 2015, Candis Club donated £10,000 to the project. The University of Liverpool raised a total of £22,057 during this time, which will go towards their partnership with Alder Hey Children’s Hospital, to build a new centre for research
and clinical staff.