KUALA LUMPUR, May 10 — Lavaniyah Ganapathy’s world came crashing down when the doctors broke the news that her six-year-old daughter was diagnosed with a rare form of leukemia in 2021.
She could not fathom how her daughter Mahiyaa Bala, who was only complaining of eye pain, could suffer from something severe like cancer.
“At first, I prayed hard that it would just be a glitch in the lab or something else, but finally I accepted it for what it was.
“From that point onward, I started reading voraciously about cancer and every possible treatment option.
“Mahiyaa was categorised under high-risk. The doctors told us that she has to undergo CAR T-Cell therapy in Singapore before getting a bone marrow transplant," she said.
“The treatments were extremely costly and we needed a lot of money.”
Fortunately, Lavaniyah had all her three children insured when she was seven months pregnant and both she and her husband had stable jobs to cover their daughter’s treatment costs.
Soon, she realised that was not the case for many other parents of children with cancer.
Her turning point came when she was sitting outside the paediatric oncology ward, six months after her daughter started treatment.
“My husband noticed a family desperately scrambling for RM750,000 for their five-year-old daughter’s treatment.
“So, I called up my friends and other organisations to raise the funds.
“I was shocked to find out that almost no cancer-related associations in the Peninsular provided financial aid for children with cancer," she said.
“Most of them only funded research and development initiatives.
“Still, we managed to gather the money within a week. But by then, the child had succumbed to the cancer."
The tragedy deeply moved Lavaniyah, who started pondering on the series of events.
“Why should my healthy daughter go through this ordeal? And, why should another girl, fighting the same battle as my daughter, lose her life?
“For me, every child with cancer should have the chance to fight.
“Whether they win or lose the battle is a different matter,” she said.
“But, they should not lose the chance to fight because of financial burden,” she said, adding that medical bankruptcy is very prevalent in Malaysia.”
Lavaniyah said some parents even filed for divorce because they were overwhelmed by their financial burden, leaving their children battling cancer on the lurch.
In November 2022, Lavaniyah formally established the Children Cancer Association Malaysia (CCAM) and interestingly, her daughter was the foundation’s first contributor.
“Mahiyaa spent most of her time drawing and painting at the hospital.
“So, we held an online auction of her artworks on social media and raised close to RM2,500 for CCAM.”
So far, CCAM has provided 56 children with cancer with financial aids, ranging from paying for medical bills and medicines to even covering a bone marrow transplant.
A team of doctors and legal advisers also assist Lavaniyah to verify each case before CCAM rolls out the aid.
Lavaniyah is pushing for more Malaysians to register with the Malaysia Stem Cell Registry (MSCR) and donate their stem cells to patients in need.
She also urged parents to get their children insured as early as possible, especially with children becoming more vulnerable to infections and medical bills skyrocketing.
Families in need of financial aid for children with cancer can contact CCAM at 016-3312427 or e-mail them at [email protected].
