Zach Parnaby on Xmas Eve, 2014 after numerous trips to hospitals in Darlington and Newcastle, was diagnosed with a rare terminal disease called Krabbe Leukodystrophy.
It is a rare genetic disorder of the nervous system that destroys part of the brain which produces Myelin the protective shield around nerves.
Zach was a healthy and happy little boy who despite being born 5½ weeks early had met every milestone and had just about walking. He is now unable to walk, stand sit, use his arms or hands and is fed via an NG tube.
Zach’s onset of symptoms have been rapid and the family have been told to prepare for its progression to be also rapid.
Parents Lindsey and Ben, and all the family are devastated, however they have agreed that Zach’s life will continue as normal but in the short time may have to achieve a lot. They have created a bucket list for him and hope people can support and assist them where possible.
Top of the list is to find a cure for Krabbes disease and for it to be screened for at birth.
Other aims for Zach include:
To meet Mickey Mouse
To swim in the sea
To build a snowman
Go sledging
Meet a real bear
To meet Santa
To ride a bike
Meet a famous person (preferably a Newcastle football player).
Ride on a red London bus
To have a dog.
The British Legion Club members took Zach’s story to heart and have raised over £700 to help him achieve his goals. His Grandad was at the club on Sunday morning to collect the cheque presented by fundraisers Jayne Bayles, Sue Land and Ray Henderson.
The following letter of thanks has been received from John Dodds:
Dear Jane
On behalf of all of my family, most especially my Grandson Zach, my Daughter Lindsey and my Son in Law Ben, I would like to thank you and everyone who was involved at the British Legion Club in raising the magnificent sum of £705-00 for Zach.
It will help us fullfil one of the things on Zach’s bucket list – to find a cure for this awful disease. Some of the money that was raised will go to a charity called “Save the Babies” which works very closely with families like ours. It is also working very closely with Cambridge University in trying to find a cure for KRABBES.
Apart from helping Zach achieve his bucket list our family is to campaign to have this awful disease tested for at birth as a standard procedure, We need 100,000 names to send a petition to Jeremy Hunt the Health Secretary to insist this is done. Please help with the petition.
Once again please accept my family’s huge thanks for providing us with this Cheque and I can assure you it will be put to good use and to be of some help by helping fund this research.
John Dodds
Zach’s Grandad
