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Nishan’s story
November 27, 2024
Five-year-old Nishan may be tiny — less than half the size of other boys his age — but his little heart is bursting with love.
When Nishan smiles, his eyes sparkle and he lights up the room. He’s non-verbal, but Nishan knows exactly how to tell his family he’s happy.
His mum Sam, dad Bhupinder and sister Mehar shower him with affection every day, making the most of every second they have with little Nishan, because they know they could lose him at any moment.
Nishan has a rare and life-limiting neurodevelopmental disorder that affects just three known children in the world.
There is no cure and experts have no proven treatment plan.
Living with the stress of uncertainty, plus Nishan’s round-the-clock care, is putting an unbearable strain on this loving family. It’s a weight that no family should have to carry alone.
This Christmas, we’re aiming to raise $118,000 to help ensure that very special families, like Nishan’s, have access to tailored counselling and therapeutic support provided by one of our family support practitioners. This highly skilled team of professionals includes social workers, psychologists, psychotherapists, family therapists and play therapists.
For Nishan’s family, their family support practitioner – Jenn – has become a vital source of comfort and guidance.
Nishan came into the world a healthy and happy boy, but at six months of age, Nishan started having difficulty eating.
When he stopped swallowing completely and started vomiting, his parents rushed him to the hospital.
After 12 months of tests and doctors’ appointments, Sam and Bhupinder finally received an answer. Nishan was missing a vital potassium channel in his brain, resulting in the extremely rare condition known as ‘KCNQ5 encephalopathy’.
That’s when Sam and Bhupinder were told Nishan’s condition was going to be incurable.
It’s at times like this, when the shock and trauma are overwhelming, that family support practitioners like Jenn are a lifeline.
Sam first met Jenn after she received Nishan’s diagnosis — along with the terrible news that her son could die in as little as a month. The family was devastated. Sam told us,
We felt so vulnerable, helpless… utterly broken. We thought our world was gone.
Family support practitioners provide counselling and therapeutic support to very special children and their families from diagnosis and treatment, through to end of life and bereavement.
They often witness emotional, existential and spiritual suffering, while supporting families to have honest conversations about death, dying, and grief.
When Sam received her first call from Very Special Kids, she was overcome by Jenn’s empathy and understanding. For the first time since Nishan’s diagnosis, Sam felt she wasn’t alone:
Jenn touched my heart. It was the first time I enjoyed talking and had someone I could share with. She connected with me just like an old friend. I felt at ease with her.
This is the profound impact our staff can have on the lives of families like Nishan’s. But Jenn is only one of eighteen family support practitioners who cover the entire state.
Will you give another family like Nishan’s the comfort of knowing they are not alone by sending a kind Christmas gift today?
Christmas can be a stressful time for many of us, but for a family who has a seriously ill child, it can prove completely overwhelming. Please give the gift of comfort this Christmas for a family like Nishan’s.
