A Promise For Zach

On Xmas eve 2014 after numerous trips to hospital we were given the devastating news that Zach had a rare and terminal disease called Krabbe Leukodystrophy, also known as globoid cell Leukodystrophy. It is a rare genetic disorder of the nervous system that destroys the protective coating of nerve cells in the brain and throughout the nervous system.

Prior to the 26th November 2014 Zach was a healthy and happy little boy who despite being born 5.5 weeks early had met every milestone and had just about mastered walking, he now is unable to walk, stand sit, use his arms or hands and is fed via an NG tube. Zach's onset of symptoms has been rapid and we have been told to prepare that his progression may also be rapid.

Myself, Ben and our family are devastated with this however have made an agreement that Zach's life will continue as normal but in the short time that we may have we plan to achieve a lot, we have therefore created a bucket list for him that we hope people can support and assist us in achieving where possible.

We have excellent support from our family and friends but with some of the things we want to achieve for Zach may need to reach out to other people for some help.

We have also had amazing support from savebabiesuk who are working hard on raising awareness of Krabbes and we hope to support them in their work via this page, as Krabbes is very rare not many have come across it and this was certainly the case for Zach which led to such a difficult process in getting a diagnosis. There is no treatment for this disease however if diagnosed early then there are potentially life saving options available to those children, but unfortunately after meeting with professionals at the great Manchester City hospital we we told that Zach's symptoms are too progressed for this to be an options, however if detected early enough he may have been.

So please like and share this page to raise awareness of Krabbes disease, and support ongoing work for early identification and newborn screening, please also take some time to visit savebabiesuk.org and support them if you can.

Zach's List:
1. Find a cure for Krabbes disease
2. For Krabbes disease to be screened for at birth
3. To meet Mickey Mouse
4. To ride in a fire engine and meet fireman Sam
5. To swim in the sea
6. To build a snowman
7. Go sledging
8. Meet a real bear ( I love bear's and this was one of my first words)
9. To meet Santa
10. To ride a bike
11. Meet a famous person (preferably a Newcastle football player)
12. Ride on a red London bus
13. Take a boat trip
14. To have my own dog ( mummy and daddy are working on this for me)
15.see a waterfall and swim near it if it's safe to ( I love water)
16. Take a ride on Thomas the tank engine ( booked for 22/3)

To be continued.............


Facebook page - Keep in touch