Young twins return from pioneering treatment to fend off genetic condition
- Credit: Copyright: Archant 2016
They are like every other smiley 13-month-olds, but twins Oscar and Phelix Scott have already been through a lot in their short lives.
The youngsters have recently returned home to Eccles, near Attleborough, from Italy where they had pioneering gene therapy treatment to help fend off an incurable genetic disease.
Metachromatic Leukodystrophy (MD) – which causes degeneration in the brain and central nervous system – has already robbed the twins' older sister, Paige, aged three, of her sight and her ability to walk.
The twins were given chemotherapy to kill off their immune system and the affected genes before new ones were inserted. But Oscar suffered complications and ended up with pneumonia and kidney and liver failure.
The boys' mother, Leah – who travelled out to Italy with a family friend while her husband Shaun stayed at home to look after Paige – ended up spending her time going between the two different hospitals where the boys were staying.
She said: 'Oscar's chemo hit him really hard. They were in separate hospitals for weeks and we had to stay with them 24 hours a day. It was just exhausting.' And if that was not bad enough, back home Paige also took a turn for the worst. Mrs Scott had to travel home when it was feared her condition was getting worse. But she has since improved.
The couple, who were mostly apart during the twins' four months of treatment, have said they are pleased with how it has gone.
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Mrs Scott said: 'They are doing as well as they can be doing. At the moment the results of the treatment are really good. We hope it has delayed the symptoms. Oscar, as far as we are aware, will not have kidney problems.'
Mr Scott added: 'We just went to Center Parcs recently and are just trying to enjoy the rest of the summer.'
The Scott family will be holding a fundraising day at the Banham Barrel on Saturday. August 27 from 12pm.
There will be arts and crafts, music, food stalls, a kids corner and jugglers and clowns.