December 6 2013 Latest news:
By lucy wright
Monday, October 22, 2012
A couple have set up a charity trust to help support their disabled son, who suffers from a unique genetic disorder.
It is a condition where the heart muscle becomes thickened.
This sometimes makes it difficult for blood to leave the heart. It is usually caused by gene abnormalities.
Around one in 5,000 people in the UK develop the condition. It is sometimes present at birth and can develop in young children but it most commonly develops in the teenage years.
Ian and Caroline Duerden, who live in Bromedale Avenue, Mulbarton, are setting up Oliver’s Tree, to help pay for a wheelchair and specialist equipment for their four-year-old son.
“Oliver was our third attempt at IVF. We said we would try three times and then we would look into adoption,” Mrs Duerden said.
“My pregnancy was fine and at the five month scan they queried his bowel and the artery leaving the heart, but they said he was fine.”
After a smooth pregnancy, Oliver was born six weeks early.
When they came out of the operating theatre, Mr Duerden, a former professional footballer who now works as a fireman, spoke to consultants who told him that Oliver had dysmorphic features.
“They did a chromosome check on Ian and I. We were both normal but Oliver had a little bit extra of his chromosome one. Doctors told us there was no-one else in the world with that condition,” Mrs Duerden said.
Doctors also discovered Oliver had square ribs and severe scoliosis, where his spine was curved.
When Oliver was five months old, he was diagnosed with a hernia but doctors were unable to perform surgery because he had a heart murmur. He was referred to specialists in Sheffield before being transferred to Leeds paediatric hospital where consultants discovered valves in his heart were leaking.
“They asked us to come into a room and we knew it was going to be bad news. The doctors said that they did not know how he was still alive and said he must be alive on love.”
They were told Oliver only had two weeks to live and they went away to a retreat to spend their final days together. But after returning to the hospital they were told Oliver’s condition had improved.
As his body became stronger, he was able to undergo major surgery to help correct his spine and ribs.
When he was three years old, Oliver underwent a 12-hour operation to insert metal rods into his back and to move his twisted rib cage.
Just before the operation, Mrs Duerden discovered she was pregnant with her daughter Nancy, who is now seven months old.
Because Oliver is the only person in the world with the unique chromosome abnormality, the family is uncertain about his future, but Mrs Duerden said: “Oliver is a happy boy and he is always smiling.”
She praised the work of NANSA (Norfolk and Norwich Scope Association) and Portage workers, who helped Oliver to engage in sensory play time.
A charity golf fundraiser and summer ball will take place on June 21 at Dunston Hall.
Anyone who wishes to get involved should call Mrs Duerden on 01508 579017 or email firstname.lastname@example.org