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£12,000 raised to help boy with genetic disorder so rare doctors had to Google it

PUBLISHED: 10:56 24 April 2019 | UPDATED: 13:22 24 April 2019

Jack Wright, who was diagnosed with a rare genetic disorder, with his mum and dad, Sian and Carl.
 Picture: Sonya Duncan

Jack Wright, who was diagnosed with a rare genetic disorder, with his mum and dad, Sian and Carl. Picture: Sonya Duncan

Archant 2017

The family of a little boy with a rare genetic disorder have moved a step closer to getting him treatment not available in the UK after a charity golf event helped raise £12,000.

Twenty teams of four took part in the charity golf day at Wensum Valley Golf Club that raised £12,000 to help Diss youngster Jack Wright get treatment overseas. Picture: Richard WrightTwenty teams of four took part in the charity golf day at Wensum Valley Golf Club that raised £12,000 to help Diss youngster Jack Wright get treatment overseas. Picture: Richard Wright

Jack Wright was not even two years old when tests showed he had Pelizaeus-Merzbacher Disease (PMD), a genetic disease which results in slow development. The condition, which affects one in nine hundred thousand in the UK, is so rare even doctors had to Google it.

The condition affects his balance, his speech and the ability to walk. His parents Sian and Carl Wright, from Diss, and family have been raising £25,000 to get Jack treatment overseas as well as hoping to set up a support group to help other families.

Their latest fundraising drive saw 20 teams of four players take part in a Good Friday charity golf day at Wensum Valley Golf Club as well as a charity auction with dozens of prizes donated by both local and national businesses, organisations and individuals.

Diss youngster Jack Wright was diagnosed with a rare genetic disorder. His family are raising money to send him overseas for treatment. Picture: Richard WrightDiss youngster Jack Wright was diagnosed with a rare genetic disorder. His family are raising money to send him overseas for treatment. Picture: Richard Wright

Jack's grandfather Richard Wright said: “We could not believe it. It is just an outstanding amount of money raised in such a short time. We had estimated about £4,000-£5,000 but to get £12,500 is a tremendous amount.

“There were about 40 items at auction, everything from a Virgin air balloon flight to meals at Roger Hickman's restaurant. All the local community pulled together.

“One anonymous lady donated £1,000, another lady at the event who helped with the raffle donated £370 cash as she celebrated an anniversary she asked for cash instead of presents. Cotswolds of Riverside in Norwich donated a £500 voucher. Even Harrods in London sent a teddy bear to be auctioned.

Jack Wright with his mum and dad, Sian and Carl following the charity event at Wenseum Valley Golf Club.
 Picture: Richard WrightJack Wright with his mum and dad, Sian and Carl following the charity event at Wenseum Valley Golf Club. Picture: Richard Wright

“The golf club said they had never had such a charity event there on such a scale. My sincere thanks to Keith Wright and Mike Pitt for helping organise the tournament.”

The money raised will go towards seeking treatment with Jack's doctor Professor David Rowitch at Addenbroke's working with a leader in the field of PMD in Amsterdam.

Mr Wright said: “Stem cell treatment is probably where we need to be but we need to wait until he gets a little bit older. They won't do anything until he is about six or seven. The treatment in Amsterdam is more therapeutic for him.

Participants at the charity golf day and auction at Wensum Valley Golf Club that raised £12,000 to help Diss youngster Jack Wright get treatment overseas. Picture: Richard WrightParticipants at the charity golf day and auction at Wensum Valley Golf Club that raised £12,000 to help Diss youngster Jack Wright get treatment overseas. Picture: Richard Wright

“Jack is improving day by day but very slowly. He can say words and answer you back now in sentences. But he can't walk and he still struggles and has to move about using the furniture to hold on to. That is our main aim to get him walking.”

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