Nur Ainul Darwisya – 11 Years Fighting For Her Life, The Eldest Child Who Knew Suffering Too Soon

Nur Ainul Darwisya binti Mohd Zulfikri, the eldest of seven siblings, was only 1 year old when she was diagnosed with Nephrotic Syndrome — a chronic kidney disease that requires continuous treatment and steroid medication since infancy.

Year after year passed, but the illness never went away. In 2019, doctors delivered the most heartbreaking news — Ainul’s kidneys had completely failed.

Since then, the hospital has become her second home. Starting with CAPD (Continuous Ambulatory Peritoneal Dialysis), Ainul has now been undergoing hemodialysis 3 times a week since 2021 at Tanah Merah Hospital, and this will continue for the rest of her life, unless a miracle or organ transplant happens.

Every week, her mother has to travel back and forth to the hospital with Ainul, while her other children at home are still very young and need attention. The youngest is only 1 year and 3 months old, and also requires hospital appointments with an eye specialist.

Ainul has been in the ICU before. She has gone through multiple surgeries. And through all these years, her mother has not been able to work — it has been 8 years since she stopped working, because life is only between home and hospital.

The family survives on just RM600 monthly assistance. That is all to support 7 children, including Ainul who needs special care, medical supplies, and equipment.

Ainul now relies on an oxygen concentrator and BPAP machine to help her breathe. Their electricity bill rises to RM150 a month, just to power these medical devices. On top of that, there are:

• Weekly trips to the hospital (3 times) 
• Oxygen refills — 2 tanks every 2 weeks from Pengkalan Chepa. If they could afford to rent 2 more tanks (RM400), it would reduce the number of trips 
• Monthly medications for her liver and bone healing 
• Special milk (Pediasure), disposable diapers, wet wipes, and bottled water — all necessary for Ainul’s survival 

Her mother said: “It’s bitter… but there is sweetness in going through it.” Even though sometimes her heart leans towards alternative medicine, when it comes to her child’s life, the hospital is always where she turns.

She also continues trying traditional and natural treatments, but there has been no cure for Ainul yet. Still, they never stop hoping. Never stop praying.

Ainul never asked to be sick, but she is fighting with all her strength just to live. And her mother is struggling every single day, without rest, for the sake of her children who are still so small and depend on her entirely.

Every ringgit of your donation means so much. It is not just money — it is life, hope, and strength for Ainul to keep going.

Let us ease Ainul’s burden, and her family’s. So that they are not alone in this long battle.