Story
Hi,
In October 2013 we were devastated to learn that my adorable nephew Oliver had been diagnosed with Sandhoff Disease. Consultants initially believed Oliver had Tay-Sachs (a variation of Sandhoff but less severe) but sadly the final diagnosis was the worst news ever.
Sandhoff is a very rare inherited disorder for which there is no cure; it progressively destroys nerve cells in the brain & spinal cord. Children with the severe infantile form of Sandhoff disease usually live only into early childhood. There are currently no treatments for Sandhoff, only palliative care for symptoms arising from the disease. We believe there are currently less than 15 children in the UK that have been diagnosed with Tay-Sachs / Sandhoff, to give you an idea of how rare these illnesses are.
Since the diagnosis my brother & his partner have been supported by a fantastic but small charity called The Cure & Action for Tay-Sachs (‘CATS’) Foundation Their aim is to raise awareness, support, funding for the research into the disease hunting for a potential treatment. The work they do is invaluable to families facing this terrible but inevitable fate & their continuous contact, advice, information & support is simply amazing. CATS generosity reaches out to all of the families & ranges from arranging special treats for siblings to funding some of the essential respite care.
For those of you who know me you will understand that I’m not exactly an athlete…I’m more likely to be found drinking cocktails in Las Iguana’s than water in the gym..! However, I could no longer ignore the increasing waistline from this sociable lifestyle & I decided to get fitter & hopefully drop a few pounds. So I joined a gym, got motivated, cut out the cocktails, started eating more heathy & took up juicing.
It paid off, so far I have lost over a stone, dropped a dress size & I have even discovered that I can actually run (a bit) - even at my age……. I joined a beginners course at a local running club with the intention of entering a 5k to raise money, however my training has gone so well that I have now registered for a 10k as well.
Marley & myself will be taking part in a 5k - The Color Run in London on 1st June along with some of our close friends who have all signed up to help. The Color Run is a rather crazy but fun race where participants are doused from head to toe in different coloured powders at each kilometre so it will be a fun day.
Then on the 5th July I will be running the WR10k in Milton Keynes @ Willen Lake - I have already got my running plan under way & if my training continues the way it has who knows a half marathon could be next…...
Its so hard to comprehend just how awful these rare diseases are until it happens to someone close to you - its totally heartbreaking. This charity is very close to our hearts so please help us to stay motivated with training & assist us to raise as much money / awareness as possible for AMAZING CATS Foundation.
Thank you from the bottom of our hearts for all your support & generosity helping us to give something back - everyone cares but it's donating whatever you can that keeps these small charities going so they can support families like my brother & his partner.
For all of those who have already donated - THANKS so much
Kim & Marley