Diss rallies around to offer help to family of boy with rare genetic disorder
PUBLISHED: 10:06 18 July 2018 | UPDATED: 10:06 18 July 2018
The family of a little boy with a rare genetic disorder say they have inundated with support following a £25,000 fundraising appeal.
Two-year-old Jack Wright was diagnosed with Pelizaeus-Merzbacher Disease (PMD), a genetic disease for which there is currently no cure or standard course of treatment, in March.
His parents Sian and Carl Wright, from Diss, face an anxious future as they consider whether to send Jack overseas for stem cell treatment. However they are awaiting clinical trials to take place before the family will know for certain whether the treatment is possible in Jack’s case.
In the meantime friends and relatives have rallied round to set up an online fundraising page to raise £25,000 to provide special equipment to help Jack as he grows up.
They have been overwhelmed by offers of support from across Norfolk. Jack’s grandfather Richard Wright said: “Everyone has been so generous. We’ve had so much support from the town and right across Norfolk. It has been amazing and overwhelming to see the reaction from people.”
His father Carl Wright raised £353 taking part in Diss Cyclathon and saw organisers donate a further £100. Whilist £300 has also been donated by Great Yarmouth Haven Rotary Club.
Meanwhile a fundraising family fun day will be held at Jubilee Hall in Loddon on July 21 including a charity auction with prizes donated by businesses from across the county including Hollywood Cinemas.
Malcolm Bugge, vice-president Great Yarmouth Haven Rotary Club, said: “This is the last thing any parent or grandparent wants to hear or be faced with. There is no treatment in the UK and that potentially means having to travel overseas. It is going to cost a lot of money to get Jack treatment on an on-going basis. When everyone heard about Jack we were all keen to help.”
Richard Wright said: “We have been investigating potential treatments from as far afield as Moscow, India, South Africa, Switzerland, China and California. There is no proven treatment. Stem cell treatment is very new and it is unregulated.”
Doctors did not become worried about Jack’s development until he was 18 months old. Following tests which included an MRI scan, doctors diagnosed him with PMD which affects the development of motor skills.
“Jack is in fine form,” said Mr Wright. “His mum keeps him happy and in good spirits. He has been enthusiastically supporting England in the World Cup.”
• If you would like to donate to Jack’s page, go online to www.gofundme.com/help-us-to-help-jack