In early 2017 we were given the awful news that our little girl, Caitlin Wilkie, had been diagnosed with an extremely rare genetic condition called Bardet Beidl Syndrome. This syndrome has varying symptoms but the main ones are blindness, learning difficulties, development delays, obesity and heart & kidney problems. At present Caitlin is 1 of 5 known sufferers in Scotland and 1 of approx 500 in the whole of the UK.
There are no cures for this but Professor Phillip Beales from Great Ormand Street Hospital is researching this in great depth and may only be a few years away from finding a cure to prevent the blindness element of the syndrome.
Caitlin is only 3 years old and has already had to endure multiple hospital visits, 2no 5hr operations and has already started to lose her night vision which is the start of the eye sight degeneration. We don't know what the future holds for her, but we are determined to do all we can to give her as many memories as we can.
The BBS Uk charity is the only registered charity in the UK for this syndrome and has to rely on volunteers running it and has to work from a very small budget. However, they provide a huge amount of support and manage to work wonders with the small budget they have.
Our aim is to dedicate 2018 to a series of fundraising challenges to help this charity and the ongoing research it provides in order to try and get this breakthrough that may help prevent our little girl losing her sight.
We, along with some close family and friends are embarking on a 400km cycle on the west coast in 3 days ; 3 close friends are running the Inverness half marathon ; and myself and Ash are running in the Great North run as well. We also plan to organise a race night in the summer months.
This charity obviously means the world to us as it is the only charity capable of changing our little warriors future and possibly preventing her sight loss. We would ask you all to dig deep and give anything you can to help us reach our target which will in turn help our little star in what lies ahead for her.
#supporting Caitlin Wilkie