Saiyuri Chetty and her mother Roshini. “At 21 I had to grow up to understand what was happening and over the years learn how to take care of somebody else instead of doing what your typical early-20s individual would be doing.” Photos / supplied by Saiyuri Chetty
Saiyuri Chetty and her mother Roshini. “At 21 I had to grow up to understand what was happening and over the years learn how to take care of somebody else instead of doing what your typical early-20s individual would be doing.” Photos / supplied by Saiyuri Chetty
Public Interest Journalism funded through NZ On Air.
May is a month of mourning, remembrance, and hope for Saiyuri Chetty. A year after her mother's passing, Saiyuri is looking to provide support for those who are affected by progressive supranuclear palsy (PSP).
After a five-year struggle with the rare neurodegenerative disease, Roshini Chetty succumbed to her condition in May last year. The timing allowed Saiyuri and Roshini to celebrate their last Mother's Day together.
May also happens to be PSP Awareness Month. For Mother's Day this year, Saiyuri is raising funds for the little-known condition.
"Progressive supranuclear palsy is a degenerative neurological disease that gradually affects and takes away a person's ability to complete normal functions such as eating, walking, talking, and at the present moment has no cure," explains Saiyuri.
Saiyuri was 21 when she began to notice the first clues to her mother's condition. Roshini began to suffer from frequent falls due to her declining sense of balance.
Progressive supranuclear palsy is a rare disease and as a result, diagnosis can be a difficult process.
Saiyuri Chetty (left), with her parents Roshini and Johnny Chetty. Photo / Supplied/Saiyuri Chetty
"This is when we began taking her to a neuroscience professional for testing. We saw her personality change into a very solemn and silent character, often as though her mind was constantly elsewhere. At this point, they suspected possible dementia."
Roshini was trialled on Parkinson's medications but suffered from hallucinations as a side effect.
"About a year later they realised it couldn't have been Parkinson's as she didn't have any of the physical shakes present in Parkinson's. They looked further into motor neuron diseases and were able to pinpoint that it was progressive supranuclear palsy, a very rare and little-known brain disease to the general public."
Over the next few years, Saiyuri and her father, Johnny Chetty, juggled work and caring for Roshini as they were only entitled to a few hours with a professional carer each day.
"She became unable to shower herself, go to the toilet, eat on her own, and struggled with pain throughout the day and night.
"Her physique depleted, her muscles and bones stopped working and started to lock up. We would practise daily exercises with her to slow down the progression. In the later stages she stopped talking, couldn't walk or keep her head up, and solids became impossible for her to eat.
"PSP patients are most susceptible to death from aspiration so we would try to avoid any risk of her choking or inhaling fluids."
In Roshini's final months, her movement had reduced to breathing and she could only be transported using mechanical supports.
Saiyuri Chetty set up a fundraiser to allow Roshini to meet Queen + AL, Roger Taylor (from left), Adam Lambert and Brian May. Photo / Supplied
"My mum was a remarkable woman. She was highly qualified, incredibly intelligent and the wisest person I know. She loved gardening - red roses were her favourite.
"She taught me how to be a person, how to make decisions, how to cook, how to look after others, how to be kind and compassionate and she instilled in me the lessons and morals that she carried throughout her life."
Saiyuri wants others this Mother's Day to take the time to remind those around them that they are loved and cared for.
Saiyuri Chetty as a toddler with her mum, Roshini. "She would help me with school when I struggled, she would listen to me practise my singing every day and she would dance with me." Photo / Supplied
"Tell your mum just how much you love and appreciate them. Whether that be your mum or someone you see as a mother figure. Let the ones you love know how much you love them, and let them know how important they are in your life.
"I was lucky enough to show my mum how much she meant to me before she left … I spent Mother's Day last year with her and for that, I can be happy and have no regrets.
"So spread the love and make her day, because there is no one else in this world quite like a mother."
