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Appeal to help tee off event in aid of boy with rare genetic disorder

PUBLISHED: 12:14 04 February 2019

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

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

Archant

The family of a little boy with a rare genetic disorder are appealing for support for a charity golf event as part of a fundraising drive to get him treatment not available in the UK.

Jack Wright with his mum and dad, Sian and Carl.
 Picture: Sonya DuncanJack Wright with his mum and dad, Sian and Carl. Picture: Sonya Duncan

Jack Wright wasn’t even two years old when tests showed he had Pelizaeus-Merzbacher Disease (PMD), a genetic disease 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 his family are trying to raise £25,000 to get Jack to the USA for treatment and are hoping to set up a supprt group to help other families.

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

Fundraising efforts will include a Good Friday charity golf day at Wensum Valley Golf Club on April 19 and they are appealing both for teams to take part and auction prizes.

The event will include team and individual prizes for nearest the pin, longest drive and beat the pro competitions, while a new car will be up for grabs for a hole in one.

Jack’s grandfather Richard Wright said: “We understand people are probably inundated with requests for charitable donations but hope that along with the organisations that people support they may also be able to help Jack’s plight by donating an auction prize or a donation we can spend on auction prizes for this worthy cause.”

Team entry to the event is £200. For futher details contact the event organiser Mike Pitt on 07473 856065 or at mikepitt39@icloud.com

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