Sick Kids Hospital’s pioneering Crohn’s research offers hope for Destiny
AS mother-of-three Fiona Docherty watched her eldest daughter Destiny play outside with her school friends, she knew something was seriously wrong.
Stood next to her classmates one January morning, the impact of the previous few months on her tiny frame was all too visible.
“I used to compare her to other kids at school and I remember thinking that she looked terrible,” Fiona, 37, a full-time mum, recalled. “I knew there was something wrong with Destiny but I just didn’t know what.
The Newcraighall youngster’s appetite had virtually vanished as a result of feeling constantly nauseous, and the little food that she did manage to eat wasn’t in her stomach for long, with Destiny often waking up several times during the night to be violently sick.
To add to her discomfort, she had also been experiencing severe stomach pains and diarrhoea. The dramatic weight loss which followed would see her weight drop to just two-and-a-half stone at the age of six.
“She looked horrific, her underwear was hanging off her,” Fiona says. “She couldn’t eat certain things and what she did eat during the day, she vomited at night. It was distressing to see her like that.”
After several trips to the doctor and a referral to the Sick Kids, where an endoscopy and colonoscopy to examine Destiny’s gastrointestinal tract was carried out, Fiona and her husband John’s fears were confirmed.
Destiny, now ten, was diagnosed with Crohn’s disease throughout her gastrointestinal tract – a long-term illness that causes inflammation in the gut and for which there is no cure – at the age of six in February 2009. She is one of around 90,000 people in the UK with the condition.
“We were devastated – there’s no other word to describe it,” Fiona said. “Your whole life is turned upside down the minute you hear your child has Crohn’s disease.”
At the time of diagnosis, Destiny was kept in the Sick Kids hospital for a whole month.
For 42 days, Destiny was put on the Modulen diet – a nutritional drink – in an attempt to relieve her symptoms, before taking steroids for five months, during which her weight rocketed to five-and-a-half stone.
In April 2009, Destiny’s parents took the decision that she would start taking the drug Infliximab, which has serious side effects, but seems to be improving her quality of life.
She also takes 11 different tablets every day.
Fiona added: “She gets an Infliximab infusion every eight weeks at the Sick Kids. If she continues to feel well then it will go to every ten weeks and then every 12 weeks until the doctors decide she’s in remission.
“Before she was on Infliximab, she couldn’t go out and play with her friends because she didn’t have the energy. She had no quality of life. I used to take her to the shops and when she got there, she couldn’t walk – her body would pack in because she was absolutely exhausted. I would phone my husband and he would come and pick us up, rather than walking home.
“There’s been lots of occasions where we’ve taken her somewhere nice for the day and we’ve had to come back because of fatigue. She’s missed out on a lot of things in her childhood like pantomimes, a lot of learning in school, school trips and birthday parties because she’s been too ill.
“But she has a far better quality of life now than what she had originally, and we are now looking to the future.”
Research currently being led by Edinburgh University and funded by the Sick Kids Friends Foundation to the tune of £30,000 is offering fresh hope for people with Crohn’s disease.
Around 300 children and teenagers across Scotland who have had Crohn’s disease for at least four years, of which more than 100 are – or have been – patients at the Sick Kids hospital, are taking part in the research, which will develop an Edinburgh Paediatric Crohn’s Disease Severity Score – which will allow more personalised care for the condition.
The research, which will run until spring next year, uses clinical and genetic information, as well as X-rays, blood tests and stool tests for each of the patients, to develop a “score”.
Consultant at the Sick Kids hospital, Professor David Wilson, 52, who lives in Newington, said: “We will be able to statistically create a disease severity score, predicting those children at the highest risk of severe Crohn’s disease in the short to medium-term at the time of diagnosis. The obvious implications of this are to allow us to personalise treatment and therefore from diagnosis, provide the appropriate level of therapy, minimising side effects or intolerances to strong medications, minimising disease-related complications, but maximising clinical benefit in those who need it most.
“This scoring system could easily become the standard score used worldwide in future trials and descriptions of targeted interventions in paediatric Crohn’s disease.”
Meanwhile, Fiona, who was full of praise for the “brilliant” staff at the Sick Kids hospital, said: “I think the research is an amazing thing and hopefully it will give us a future. The research gives us hope, and Destiny hope, and that’s what keeps us going that they will eventually find a cure.”
Destiny, who is now a healthy weight, added: “Before, my life was overruled by Crohn’s disease but I’m starting to get a little bit more quality of life now. I have my ups and downs, but I’m getting there.
“I think it’s great that they’re doing more research into Crohn’s disease.”
The Evening News has joined forces with the Sick Kids Friends Foundation (SKFF) to mark its 20th anniversary this year, and we will be working with the charity to celebrate its achievements and help make the anniversary year its best yet.
Since it was founded in December 1992, the SKFF has smashed targets and raised £18 million for the Sick Kids hospital and related children’s healthcare centres – £14 million of which was raised in the last decade.
Other notable research at Sick Kids’
THE neurology department has carried out various research, including work on shaken baby syndrome – a severe form of child abuse caused by violently shaking a child.
In 2009, the Sick Kids Friends Foundation worked with Edinburgh University and the NHS to fund the children’s clinical research facility at the hospital, where a wide variety of important research programmes are now carried out.
In 2000, Mark Little, Alan Williams, Chris Cowan and Mike Balfour – who all work at the Sick Kids hospital – raised £90,000 through their Open Gold Challenge, which involved playing all six Open Championship courses in Scotland in a day. The funds have been used for research into the causes and treatment of autism.
Earlier this year, parents of children with clefts were invited to take part in a £15 million research project at the Sick Kids hospital. As part of a five-year study, DNA is being collected from children born with the condition and the programme will follow their development to adulthood.
More than 300 children volunteered to take part in pioneering research at the Sick Kids, supported by the Children’s Clinical Research Facility (CCRF), in 2010. The CCRF has participated in research to improve treatment for children with conditions such as leukaemia, asthma and cystic fibrosis.
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