Veda is almost 4 year old and resides in Watford, Hertfordshire. She was diagnosed with Rare Genetic Mutation KCNQ3 when she was just over a year old. The variant was reported as de novo which means it’s occurred for the first time and is not inherited, which was even more shocking for us. We were told this was so rare that there were only 18 recorded cases worldwide around that time, and no specific research is available. She is also at risk for seizures. Which makes us unsure of what the future will look like. 

She was born normal and was developing ok until we started noticing milestone delays and regression when she was 7 months old. 

Veda is pre-verbal, does not walk and has very little understanding of the world around her. She loves music and is a very happy and content child. She loves cuddles from her near and dear ones, gets excited to go on a swing and seesaw and loves her day-to-day routine too! 

Veda can move around the house by bunny hopping/crawling and with a lot of encouragement she has now started to use a walking frame for outdoors. She has been referred for a wheelchair for a longer distance. Her recent trip abroad for intensive therapy was really beneficial for to be self-motivated to take those steps outdoors. 

Her complex needs and global developmental delay has made us more persistent to help her with her day-to-day life. As a mum of an additional needs child, I had to give up my career to give her an opportunity to be able to stand tall within the more abled crowd. For her independent future we take her for several therapy sessions including Occupational therapy, Physiotherapy, Speech and Language and abroad for the therapies that may not be available within the country. With the help of Just4Children we are raising money for her ongoing therapies and resources that help her progress in her day-to-day life.

Thank you all for all your help.

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