Our son, Reuben, was born on the 28th August 2013, little did we know of the journey they were about to embark on.
Reuben was diagnosed with a rare genetic brain disorder called Joubert Syndrome along with some other serious complications with his gorgeous brain, after a horrendous 1st 6 weeks of his life we started to understand that there were some serious challenges up ahead for us all and that Reuben would have quite the battle to stay alive and also to thrive.
We found a wonderful full time Carer called Dan for Reuben, as his needs required specialised care, focused physio and experience, which we did not have. Dan worked with us for 18 months and helped Reuben to flourish and also saved his life on numerous occasions.
In 2016 we had a traumatic time as Reuben’s condition changed requiring resuscitation on a weekly basis, his behaviour deteriorated and overall things were not going well for him. By this time Dan the Carer had left and his replacements were not capable of dealing with Reuben’s condition. So I needed to give up work to take on the role as his full-time Carer which has its financial implications.
Reuben’s condition is not going away and as he grows it will get more challenging. To make the improvements to our home to cope with Reuben's condition we need to carry out a number of improvements and although this will be partially funded by local council grants there is a major fund raising programme required to find the additional funds required.
The overall work is going cost around £80,000, so the fund-raising challenge is pretty big.
To make our home comfortable and suitable for Reuben they need to build a wet room, which requires an external extension, enlarge Reuben’s bedroom put ramps into the house entrances and carry out some other internal changes to make life easier for Reuben and overall family life

Any help you can give is greatly appreciated,

Thank you

Sophie and Mike
Reuben's parents