Nyra - the girl with a beautiful smile.

3rd August 2017, a day I remember vividly and the day that changed our lives. After a year of various tests, my brother and sister-in-law finally received the news that no parent ever wishes to hear  - their gorgeous little girl Nyra, age 2 at the time, had a genetic disorder called Angelman Syndrome (AS).  Caused by irregularities in chromosome 15 (gene UBE3A), the condition results in severe intellectual disability, lack of speech, movement and balance challenges affecting the ability to walk unaided, epileptic seizures, sleep disturbance and many more - all resulting in the need for 24/7 care throughout the rest of her life.

Each day brings a new challenge as we learn to deal with this as a family, whilst ensuring their two other boys live as normal a life as possible.  At the same time, the smallest development she makes gives us the hope we need to go on and keep fighting the bad days together, and with the wonderful support network we have around us.

Whilst there is currently no cure for AS, hopefully with the support of our family and friends, we can help raise money for the charity to continue their research into the condition with a hope that one day they can find a cure which Nyra can benefit from and we live in hope that one day we hear her say mama or dada for the first time.

Another ask which will cost you nothing, is next time you see a child with a disability, don't ignore them or look away, please stop and smile - you will never know how much that will mean to the family dealing with something like this day in and day out.

Thanks for taking the time to read this.

Regards, Bindu (and the rest of the family)