For any parent, hearing that your child has cancer feels like the world has stopped turning. It’s a moment of helplessness, fear, and unimaginable pain.
For Lavaniyah Ganapathy, that moment came during the height of the COVID-19 pandemic when her six-year-old daughter was diagnosed with leukaemia.
In the middle of a global crisis, while the world grappled with uncertainty, Lavaniyah found herself facing an even more terrifying battle—one that would forever change her and the lives of those around her.
Today, Lavaniyah is not only a mother of three, but also the founder of the Children Cancer Association Malaysia (CCAM), an organisation born out of her deep personal pain and a desire to support families like hers who are enduring the unthinkable.
But her journey to becoming a beacon of hope for others began in the darkest days of her life.
A devastating diagnosis
In 2020, life was anything but normal as Malaysia was under Movement Control Order (MCO) during the height of the pandemic. Lavaniyah’s eldest child, a bright and cheerful six-year-old, was attending online classes like many other children her age.
Speaking to WeirdKaya, Lavaniyah shared to us that when her daughter started showing signs of fatigue, She chalked it up to the strain of learning through a screen. But when a persistent fever followed, she feared the worst: COVID-19.
We thought she had caught the virus, so we gave her paracetamol and hoped she would recover,” she recalled. “But something didn’t feel right. A mother knows when something is wrong.”
After the first visit to the doctor and several blood tests, her worst fears were realised—her daughter’s white blood cell count had skyrocketed. The diagnosis? Leukaemia.
“I’ll never forget the moment the doctor confirmed it,” she said, her voice breaking. “I called my husband to tell him, and there were a couple of minutes of silence on the phone. We couldn’t speak; we just cried. Tears fell, but no words came. It was too much to bear.
Facing the battle ahead
The diagnosis was a punch to the gut, but there was no time to grieve. As the world battled the pandemic, Lavaniyah found herself fighting to save her daughter’s life.
Her daughter’s leukemia diagnosis was classified as high-risk, and treatment options in Malaysia were limited. The only viable treatment was in Singapore, but the cost was at a staggering amount of RM750,000.
“I felt like I was drowning. How do you come up with that kind of money? But there was no option. We had to find a way. Thankfully, we had unlimited insurance, which we took out for all our children while I was pregnant. My husband also took care of the financial aspects. As a mother, you don’t think about the possibility of failure; you just keep fighting.”
And fight she did. Through sleepless nights and endless research, Lavaniyah learned everything she could about her daughter’s condition.
“I wasn’t going to be blindsided,” she said firmly. “I knew I had to prepare for the worst, but I also wanted to be ready with a solution no matter what.”
“I also want to say this to everyone—don’t go to shamans, don’t rely on unproven methods. The earlier you start proper treatment, the better your child’s chances. There’s no time to waste.”
The birth of CCAM
As Lavaniyah and her family navigated through the challenges of their daughter’s treatment, they met several people facing the same daunting journey, families that were in need of financial support, emotional strength, and hope.
She brought up one family in particular, where the parents were ready to give up because they couldn’t afford the RM750,000 needed for their daughter’s transplant.
“They were in the same daycare as us. My husband approached them, and they were so desperate. They told him they were going to let everything go because they couldn’t afford the treatment.
“When I heard about it, there’s was something inside telling me that I cannot let it happen,” she said.
Using her extensive network, Lavaniyah began to raise funds for the family. Despite the constraints posed by the MCO, they managed to collect RM750,000 in just four days.
That was also a major turning point in Lavaniyah’s life as it was the catalyst for the founding of Children Cancer Association Malaysia (CCAM), an organisation aimed at financially assisting children in need of cancer treatment.
“I realised that this was my purpose in life. I knew there were more families like ours—families who couldn’t afford the treatment their children needed. That’s when CCAM was born. I knew I had to help,” she explained.
Painful challenges along the way
Running CCAM while following through with her daughter’s leukemia treatment inevitably took an emotional toll on Lavaniyah, where she admitted that “every day felt like a new battle”.
I remember watching my daughter go under anesthesia for bone marrow procedures again and again. You’d think it gets easier, but it doesn’t. Every time feels like the first time, and the fear is still the same.
“There were nights when I would hold my daughter’s hand and monitor her pulse while she slept.
“I didn’t sleep for 60 days straight. I just held her hand and watched her breathe, terrified that something would go wrong if I were to fall asleep.”
But through it all, Lavaniyah never gave up. Her fierce determination was what kept her going, even when the odds seemed stacked against her. “I had to pull myself together because I knew I couldn’t afford to break down. Not for my sake, but for hers.”
Despite the challenges, Lavaniyah has learned to cope and emphasised the importance of staying strong as a family and urged parents to communicate with one another.
“This kind of stress can break families apart. Don’t let it happen. Work together, support each other, and don’t waste time blaming anyone.”
“Many people don’t realise how expensive cancer treatment can be, even at government hospitals. Bone marrow transplants can cost between RM70,000 to RM100,000, and not everyone can afford that. Thus, having insurance is crucial.
“Trust the doctors, get multiple opinions, and don’t let fear control you. Focus on what you can do to give your child the best chance,” she advised.
Looking back, Lavaniyah admits that the journey has changed her in profound ways.
Three years ago, I was a completely different person. I was stressed, anxious, and always on edge. Now, I feel stronger, more capable. I take things in stride. I’ve learnt that no matter what life throws at me, I can handle it.”
Through CCAM, Lavaniyah has created a lasting legacy—one that is driven by her love for her daughter and her determination to help others.
“I don’t want any child to suffer because their family couldn’t afford treatment. CCAM is here to make sure that doesn’t happen.”
Lavaniyah’s work with CCAM is far from over. As the organisation grows, she hopes to reach even more families, offering not just financial support but emotional guidance as well.
“There’s no guidebook on how to run a charity,” she admits. “I’m still learning, but I know one thing—no child should lose their life because of money.”
Through her work, Lavaniyah is breaking barriers, offering hope, and creating a future where children with cancer have a fighting chance—no matter their background, nationality, or financial situation.
Her final piece of advice is simple yet profound: “Be there for people. Be human. That’s what I’ve learned through all of this. Sometimes, that’s all someone needs.”
If you or someone you know needs help during a tough time like this, CCAM is ready to lend a hand.
You can contact them at 016-3312427 or email info@ccaminternational.com for support.
If you’d like to help make a difference, donations to support CCAM’s mission can be made here. Every bit counts.
