Identical twins Vanika and Vanshika were born five and a half weeks early, and much to their parents’ relief they seemed completely healthy. For their first few years their parents had no concerns about their health as they seemed to be reaching all their developmental milestones. But by age two issues were picked up; they were late to start talking and at nursey they seemed clumsy and had no spatial awareness.
The girls began seeing a speech therapist and a physiotherapist, but it was not until the age of 9 that their physiotherapist suggested that the twins could have a genetic condition called ataxia-telangiectasia (A-T). The girls were referred to a paediatrician and after blood tests the family received a positive diagnosis for A-T.
A-T is a very rare, progressive, neuro-degenerative inherited disease and causes cells in the part of the brain involved in coordinating movements to deteriorate. A-T can cause increasing difficulty in controlling and coordinating movements, reduces the efficiency of the immune system, increases the risk of developing cancers, and increases sensitivity to radiation. There is no cure and no way to slow the progression. Only around 190 people are affected in the UK, and the condition is life-limiting.
Now aged 12 the twins’ muscle control has deteriorated. They are unable to walk and use wheelchairs. They have trouble eating, writing and speaking coherently. Despite their disabilities the girls have a positive attitude to life and enjoy school, socialising with friends, listening to music and swimming.
This year the money raised by you on Jeans for Genes Day will help fund a part-time support worker for the A-T Society to help families whose children have been diagnosed with A-T.
Don’t forget to pay in your Jeans for Genes Day donations so we can put the monies raised to good use to support children like Vanika and Vanshika.