An Eccles family are set to embark on a five-month visit to Italy in a bid to treat their twin baby boys who were diagnosed with an incurable genetic illness.
Leah and Shaun Scott’s identical twin boys Oscar and Phelix, just seven months old, had a one-in-four chance of developing metachromatic leukodystrophy (MLD), which has left their older sister Paige, 3, unable to walk and talk.
Paige (right) with brothers Phelix (left) and Oscar. ANL-160128-105034001
Mrs Scott was pregnant with the boys when Paige was diagnosed in May last year. The life expectancy for those diagnosed and showing symptoms of the disease is about five years.
But the family have been offered a crucial lifeline. Their consultant at Great Ormond Street Hospital has put the boys forward for a pioneering gene therapy trial at the University School of Medicine in Milan, which can aid those diagnosed before symptoms start to show - which means it is sadly too late to benefit Paige.
On February 5 they will fly out to Italy. The family could be there until the end of July.
“We were upset and I think we just thought we couldn’t be that unlucky”, she told the Diss Express. “The odds were in our favour.
We were upset and I think we just thought we couldn’t be that unlucky. The odds were in our favour
Leah Scott
“We were told they were identical twins so they would either both have it or not have it.”
“We don’t know about the long term, but they should continue to be healthy.
“I don’t know how we would begin to through what we have gone through with Paige with two more children.
“It is a complete relief.
Phelix (left) and Oscar Scott ANL-160128-105046001
“We are not completely naive that we don’t know they might have problems in the future but hopefully they won’t be as bad as Paige.”
A funding page has also been set up to support the family whilst they are away. While the cost of the trials has been covered by the NHS on compassionate grounds, the appeal will help fund round-the-clock care for Paige, as well as specialist flights and disabled accommodation.
So far, more than £21,500 has been raised. Mrs Scott said the community’s response to the appeal had been “overwhelming.”
“It is just amazing,” she explained. “I think we had a £1,000 donation this week. It is not just the donations, it is people giving up their time and helping us in whatever way they can.
“It restores your faith in humanity.
“We need to take our twins to Italy for treatment but to leave our gorgeous girl when she needs us too would break our hearts, so her health permitting, we hope to raise enough to travel to Italy as a family and be together while we fight for our gorgeous sons.”
To donate, visit www.gofundme.com/6q6799a4
n Two events have been organised by Banham resident and friend of the Scott family Karlton Ramoutar in a bid to boost the fundraising effort.
The first is a dance event to be held at the Banham Barrel on Saturday, February 20, running 7pm-2am, featuring dancers, entertainers, and DJs. It will be hosted and supported by organisers DRUMSTIXX and there are 200 tickets available at a cost of £10 each. For more information on the event, visit www.facebook.com/events/1653355104944325, and for tickets, call 07715555105 or 01953 888593
The second will be an auction of promises, also to be held at the Banham Barrel, on Saturday, February 27, from 2pm to 7pm.
Prizes donated include an hour-long flight in a Cessna 172 private jet.
To view the items up for auction and to find out how to bid, visit www.facebook.com/events/1023198897737863