Earlier this year we awarded a funding contribution to a lovely lady called Simmie. This was to enable her to enjoy a canal boat holiday. Simmie has a diagnosis of Alström Syndrome, a very rare recessively inherited genetic condition. There are a range of complications and medical conditions caused by this syndrome. She is registered severely sight impaired and only has light perception due to retinal degeneration.
The holiday was organised by the charity Sense, who arrange accessible holidays for people with sensory loss. The holiday began in Southern England on the Grand Union Canal and went from Hemel Hempstead and headed towards London. All the holiday makers were ladies of a similar age and interests.
Sense provided a feedback report, which included the following quotes from Simmie.
She said "I enjoyed working the locks, being with the group and being able to join in. I quickly learnt how to use the windlass to open or close the lock gates getting used to the speed I needed to turn at and could do it independently with just a shout to ‘go’ after a few times being assisted. I also got to steer the boat a few times. Walking along the tow path was enjoyable as the support staff were telling me about the boats and wildlife in the area and we fed the birds.
It was a very varied holiday with lots of things going on such as swimming, bowling and a trip to the Battle of Britain Museum where we were given a guided tour. I really enjoyed the company of all the other people, as I live on my own. Unusually for me I managed to hold my own in the group situation, which I can often find difficult.
Having had the experience of managing in a group situation I feel I might be able to manage a bit more now and that I might be able to engage more. This experience might help me get back into the community a bit more and engage with others in the Alström Syndrome Community and with those with visual impairments. It was nice being away from everything and having a break".
We are so thrilled that this holiday has made a positive difference to Simmie's confidence.
