The Molly Watt Trust was set up to raise awareness of Usher Syndrome, a rare genetic condition which was discovered by Scottish Ophthalmologist Charles Usher back in 1914 it causes both Deafness and Retinitus Pigmentosa (a form of blindness).
Usher Syndrome is a progressive condition and to date there is no cure. Usher Syndrome not only affects hearing and sight but also causes considerable difficulty with mobility and communication and in effect can lead to isolation and depression.
Many use hearing aids or cochlear implants to access sound and are able to communicate with speech, however, as sight deteriorates it appears that so too does hearing because the ability to use visual clues like lip reading, facial feature and body language decrease.
Some communicate with sign language or tactile signing as sight deteriorates. Many maintain a small amount of central vision which remains good but makes life incredibly challenging.
Great technology affords the Usher Community to access the world, computers with the relevant software, magnifiers, eReaders, some can benefit from speech to text software, large text and tactile aids.
The Molly Watt Trust recognises many of the challenges and as a result is very active on social media, sharing information and experiences and continues to fundraise for small items or equipment to enhance life with Usher Syndrome.
Details of the condition are general each person with the condition is unique.
Usher Syndrome is a condition only really understood by the people who have it, these are the people who can teach us the most.
Many may well recognise similar issues brought up in Molly's video.
"My world might be tiny but my determination spreads the world"
Molly-Jane Watt
