Short Bowel Survivor & Friends

scroll here --->

Press release ...

Little Battler Dannielle Amos helps to raise the awareness of a treatment that can save the lives of children living with short bowel syndrome

By Ailsa Cranne Prestwich Advertiser August 04, 2011
 

Dannielle Amos, who underwent a pioneering bowel op in January A little girl is helping to spearhead a campaign to highlight a ground-breaking treatment to save children’s lives.
Dannielle, now three years old, had to undergo major surgery within hours of being born.
The youngster, who lives in Radcliffe, was born with short bowel syndrome, meaning she had only 18cm out of a possible 250cm of bowel.She faced a lifetime of intestinal feeding,
or transplants, until January of this year when specialist surgery to lengthen her bowel was carried out at the Royal Manchester Children’s Hospital by consultant specialist paediatric surgeon Antonino Morabito.

The Intestinal Rehabilitation Programme is the only one available in the UK structured and tailored to fit individual patient needs without the need for transplants. It helps patients to survive without artificial feeding, which can damage the liver.
Dannielle, who is preparing to go to Radcliffe County Primary School’s nursery department
in September, is now learning to eat normally.
Last weekend she helped to launch a new website about her condition at a charity football match in Irlam, where fellow sufferer Aaron Wynn, three, of Mond Road, Irlam, was also a guest of honour.

Dannielle’s mum Joanna, 33, of Radcliffe, said: “By launching the website, we are aiming to raise awareness of the condition to everyone, and also help out the families of sufferers.“Because of the nature of the illness, families sometimes need specialist equipment and that can be very costly.”

Dannielle was born at 32 weeks in North Manchester General Hospital in 2008, and within hours had been taken to the neo-natal surgical unit at St Mary’s Hospital in Manchester for an operation, after which she was put on an internal feeding line.She was eventually transferred to Booth Hall Hospital Where she stayed until she was nine months old and finally allowed home in time for Christmas.

Mr Morabito said latest figures, released in 2006, showed that 24 babies out of 1,000 worldwide were born with the condition.
Joanna said: “I can’t thank Mr Morabito and the staff enough. They were wonderful, they gave Dannielle a future. More than that they listened to our family at a time when we were at our most vulnerable.”
Joanna and her foster mother, retired teacher Mary Foss, 62, also of Radcliffe, decided to join forces with other families to set up www.shortbowelsurvivor.co.uk to provide all the vital information and support families need.

Treatment’s high success rate
The Intestinal Rehabilitation Programme was pioneered in Manchester in the 1980s by Mr Adrian Bianchi, and has been part of the Royal Manchester Children’s Hospital (both old and new) since 2000.
Mr Morabito sees up to six new patients each year, and treats up to 36 each year.
Since the programme began it has had a 92 per cent survival rate and 90 per cent of those are now living without artificial feeding.

Photo crop
Photo crop