Super boy Reuben was born on the 28th August 2013, he's just turned 3!
He has a rare genetic brain disorder called Joubert Syndrome.
For Reubs this means his brain doesn't give the right messages to his body for movement so every movement in his body is affected from using his legs to swallowing. His beautiful brain still contains a lot of grey matter that should have disappeared by now, he has too many folds in his brain which means as well as having difficulties with movements in his mouth makes him more likely to develop seizures.
As a doting Aunt and Uncle we are always thinking of ways to help and make life for Super Reubs and his awesome parents a little more easier to handle.
We had a list of things that would help him and generous donations that have been made meant he got a battery pack to keep his equipment running in a power cut, has got him walking in the upsee, sitting in a new car seat, using a special button switch to work his music to name a few!
His mum and dad are shortly having a huge amount of adaptations made to their house to support Reuben's future independence and to make life easier for the family in supporting him.
They are keen to maintain continuity for Reuben as much as possible and seek further support for his development through therapy programmes.
Scott and I will be embarking on a few challenges over the next year as so many people have asked how they can help Reuben and his Family.
This way they have somewhere to donate to and follow his progress!
On the 17th September Scott and his Auntie Bernie did a Half tough mudder and on the 18th September Laura completed her first ever 10k race. Now we are in November Scott will shave off his hair and beard!!!!! I will be having my hair chopped by the wonderful Laraine Rose https://www.facebook.com/HairByLaraineRoseHouseOfHair on the 22nd November and giving it to 'The Little Princess Trust' http://www.littleprincesses.org.uk/
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