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I'm dad to identical twins Vanika and Vanshika, 18, who have the progressive, neurodegenerative, inherited genetic disorder ataxia-telangiectasia, known as A-T.
Over time, A-T causes severe disability and affects a variety of body systems. It can cause increasing difficulty in controlling and co-ordinating movements, reduces the efficiency of the immune system and increases the risk of developing cancers.
By the age of ten most children need to use a wheelchair. There is no cure for this genetic disorder and no way to slow the progression.
Epidemiologists estimate the frequency of A-T is between 1 in 40,000 and 1 in 100,000 births (affecting both girls and boys). It is life limiting and adults with A-T will usually not live past their mid-twenties due to respiratory failure or cancer.
Now at the age of 18 the twins use their electric wheelchairs all the time. They both have a tremor in their hands – similar to Parkinson’s sufferers – which started when they were nine. They have difficulty eating, as swallowing is controlled by muscles which have weakened. As well as needing help eating, they are at risk of choking.
They have a lower immune system and are more prone to colds, flu's and chest infections. The whole family have been shielding during the Coronavirus pandemic.
Despite the many challenges they face, they have a positive attitude to life and enjoy college, socialising with friends, music and cinema.
Your donation will help to support Vanika & Vanshika and many other children like them.