This page is to allow us to help raise donations for the Krabbe UK charity, and in turn showing our support for our friend and, for many, our colleague, Peter and his family, Alex and George, through a very difficult time that is ahead, following George’s diagnosis of Krabbe’s Leukodystrophy. This is being done as part of our 100,000 pennies drive to raise £10,000 to support Peter and his family, and the Krabbe’s UK charity.

 

Early in 2021, Peter and Alex had a happy and healthy little boy. Approaching 18 months old at the time, he was starting to chat away and becoming increasingly confident with his walking. It was at this point when things started to change. After numerous bouts of sickness and being generally unwell, they started to notice regressions in what he was able to do. These were subtle at first but grew into regressions in mobility and speech. As you can imagine, this gave them great concern and they started looking for answers. Unfortunately, those answers weren’t quick to arrive, and you’ll understand why. It was around September when their diagnosis arrived. A rare genetic condition, Krabbes Leukodystrophy. So rare in fact that only approximately 1 in 100,000 children are born with the condition – that’s usually between 1 and at most 3 a year. In the time, George had regressed further to a point of being unable to stand or even sit unsupported, and speech of any form was an issue, as was sleep.

 

Krabbe’s Leukodystrophy is a horrible, and rare genetic condition leads to a thinning of the myelin sheath that wraps around the brain and allows nerve signals to from the brain, around the body. As this thins, those messages stop travelling, and over time the brain starts to shut down function after function. The sad truth is that nearly 95% of children diagnosed with this condition don’t see their 2nd birthday. Those who get past this point will live for a few months more, upto 7 years, although there is no roadmap, and no way of knowing what the body will do next or when.

 

Right now, George is being tube fed, and struggles for sleep and with pain every day, making life for Peter and Alex extremely difficult. But George is conscious, reacting, and still capable of the cutest giggles, and they are taking every opportunity to make memories with their wonderful little boy.