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Devastating blow for poorly Neve’s family as she goes blind

BITTERSWEET NEWS ... Joanne Rees, with daughter Neve, nine.
BITTERSWEET NEWS ... Joanne Rees, with daughter Neve, nine.

A SOUTH Tyneside mum on a fundraising mission to take her disabled daughter to America has been delivered a devastating blow.

Neve Rees-Burton is one of just 800 people in the world with a rare genetic condition called Joubert Syndrome, which has stopped part of her brain from developing.

The nine-year-old from Marsden, South Shields, has a range of medical conditions, including being unable to speak, breathing issues as well as vision and balance problems.

Next July, the Joubert Syndrome and Related Disorders Foundation will be hosting a medical conference in Chicago, and mum Joanne Rees, is determined to raise the £6,000 needed to travel there to find out more about what the future holds for Neve.

However, despite being at the halfway point of her target, Mrs Rees, 37, was left devastated on Christmas Eve when she received a letter with results from hospital sight tests saying her daughter was blind.

Mrs Rees, who is married to Paul, and is mum to one-year-old Isla, said: “While we’re delighted with how well the fundraising is going it’s also been a tough time for us as Neve has now been registered legally blind which hit me hard as there’s no ignoring it once it’s in print.

“But I’ve thought about it, and my take on it now is that at least it means we can tailor her education plans and other therapies to help her even more.”

So far, £300 has been raised after a curry night at the Vigilant Pub, in Harton Village, South Shields, while £200 was generated by a chocolate raffle at the Fountain Inn, in Highfield Road, South Shields.

Audiences members who attended Wayne Miller’s Santa’s Naughty Elf play, at the Customs House, in Mill Dam, donated £1,800 by emptying their spare change into collection buckets, while staff at B&M Bargains, in South Shields, also handed over £163.

Over the next few days approximately £2,000 will be coming in after Neve’s stepdad Paul Rees, school bus driver Billy Wilkinson, cousin Rachael Burton and friends, Ian Sarfe, Leighanne Howard and Helen Allen, all took park in the Boxing Day Dip, at South Shields seafront.

Mrs Rees said: “I thought if the buckets could raise £100 I’d be over the moon, I knew it was leading up to Christmas, and everyone’s money is taken up buying presents and things at that time of the year, so to raise £1,800 is amazing, and had me almost in tears at people’s generosity when I totalled it up at the end of the shows.

“We’re so grateful to everyone who has helped us.”

Twitter: @ShieldsGazVez