Suren Naipal honours his late brother Sukhdev, whose life was cut short by Sanfilippo Syndrome. He shares his story...
I first heard about Sanfilippo Syndrome when I was maybe seven or eight years old, and my parents sat me down and explained to me why my younger brother Sukhdev would not live a normal life. (He was about four or five when he was diagnosed.) It was a rather difficult concept to grasp at the time, however our family’s whole world changed from the introduction of that one word… Sanfilippo.
Sukhdev was the youngest of three boys (my brothers and I) who grew up in Adelaide, Australia. Our parents were of Indian descent –born in Malaysia– before migrating to England where my eldest brother was born, and later Australia. Sukhdev and I were born here in Australia. It was the first case of Sanfilippo in our family tree that we are aware of.
Our whole lives revolved around Sukhdev and his care and there was never a dull moment. Like all Sanfilippo children, he was full of energy and life. Of course, we had to learn and adapt how we did things to keep him safe and happy, but it was all worth it. Sukhdev gave our family so much love and joy!
He liked to watch TV, but the adverts were always Sukhdev’s favourite. I'm not sure who his favourite character was, as he seemed to like almost all shows, as long as there was no violence. He would walk up to the TV and try to stop the characters from fighting, and he was visibly distressed if he ever saw violence.
In his younger days, he could say full sentences such as "My mum wants to talk to you". My strongest memory would be watching my little brother and mum waiting outside for the school bus in the mornings. Sukhdev always seemed his happiest when watching the cars go by.
He could say the names of car brands and could recognise them and even different colours within the brand, associating that exact car with a person's name.
He liked being outdoors and riding his bike. He loved the water when he was young and would run into the ocean until he was neck deep. I remember he liked playing with electrical cords, light switches and anything mechanical like a cassette player.
Sukhdev attended St. Augustine's Primary School with my older brother and I for about two years (that’s where this photo of the three of us was taken) before going to Elizabeth Special School. We had a lot of assistance from organisations such as IDSC, Domiciliary Care, and CAAS.
Incredibly, Sukhdev lived until he was 31 years old, losing his battle to Sanfilippo in May 2011. He was so innocent and I learnt a lot from him and his wonderful attitude towards life.
I am definitely a much calmer and patient person after having lived with and loved Sukhdev. He never stopped smiling, even while facing many difficulties. I can only imagine how frustrating it must have been at times to not be able to communicate his thoughts and feelings.
Throughout my life, I have often compared any 'issues' I am having to what Sukhdev went through with Sanfilippo, and my problems always seem smaller. I’m reminded to be grateful for my health and just how seemingly easy I have life.
I'm much warmer to kids and adults with disabilities or learning difficulties, and I'm not sure if I would have been without having had Sukhdev in my life.
These days I'm an IT Support Officer for a college (ICHM) in Regency Park, Adelaide. Four years ago, I started supporting the work of the Sanfilippo Children’s Foundation with a monthly donation. As someone who understands the overwhelming effects of Sanfilippo Syndrome, it would be difficult to turn my back on the community who are still affected by it.
Knowing that I am assisting in the search for a cure, giving the children and their families hope is overwhelmingly satisfying and positive. Personally, as an Australian, it’s in line with my core beliefs and culture that if you can help someone, then you should help.
Thanks to the Sanfilippo Children’s Foundation for their ongoing research and projects, along with breakthroughs in technology, I believe we are constantly edging closer to a more positive outcome for the children and their families.
Every little bit helps – and I am happy to help in honour of my little brother Sukhdev Ram Naipal. He is deeply missed.