When he turned yellow at birth, it was clear to his doctors that Nethum Himantha had a serious liver condition. By the time he was 9 months old, the doctors told his parents Mahesh and Nadeeshani Jayaratne that their son would need a liver transplant if they wanted him to survive. The young couple were numbed by the news.
Their first and immediate problem was money. Mahesh did brass work to pay the bills while Nadeeshani ran their home – they had nowhere near enough to take Nethum to Chennai for the surgery. “Business had to stop because we were travelling so frequently from Pilimathalawa, which was our home town, to Ragama Hospital where the special liver unit was located,” says Mahesh. They tried to raise what they could, selling tickets at the local temple to collect funds. They also made an appeal on Facebook, but still had nowhere near the amount they needed.
Meanwhile their son was suffering.
“When Nethum was sick, his body was so itchy, and he used to scratch himself till he bled,” remembers Mahesh. “He was fully yellow, his stomach was bloated, and he cried all the time.”
Then Mahesh and Nadeeshani met someone who knew exactly what they were going through. Nimasha Sam Peiris had been a donor for her father Anil. She and her family had just returned from India where the liver transplant surgery had proved successful.
Nimasha seldom spoke about the experience because people often responded by hailing her as a hero. But that wasn’t how she saw it. “I was just glad to have had the opportunity to give a second chance at life to the man that gave me life!” she says. Her father recovered fully, but they came away with a deep appreciation of just how hard this was for families who needed this procedure.
“My family and I knew absolutely nothing about liver transplants until we lived through what we thought would be a nightmare,” Nimasha tells Mirror Magazine now, explaining that she was told the success rate for liver transplants in Sri Lanka were very low, but saw that local doctors were still waiting until the last possible minute to send the patients to India.
Her family had first-hand experience of the hardships this entailed from struggling with finances, to being unable to fulfil work commitments and juggling the needs of a young family. “I don’t even know how we overcame some of the obstacles, but we did,” she says. When they met Nethum and his family, Nimasha and her husband Lanil realised they had to help.
Together, they founded ‘Cause Love’. It immediately became a family affair – Nimasha’s sister Avanti was on board, while Anil and Nimasha’s mother Dimuthi made up their administration team. Friends of the family also pitched in. Together they would stage a fundraiser for Nethum in January 2019 which raised Rs. 600,000 – the exact amount he needed for his surgery. Nethum travelled to the hospital in India, where his mother became a donor. Now, Nethum is nearly 3 years old and recovering well.
It was while planning that fundraiser that Nimasha and her family decided that ‘Cause Love’ would be an ongoing project. Their second fundraiser is this month, with the proceeds to go to 6 year old Ashen Charuka. Ashen’s mother Chandima Dilrukshi’s eyes filled with tears as she told Nimasha that they had had Ashen after five years of marriage but that he had been ill from the time he was born.
“When the doctors told us that we needed to get a transplant, we felt like our whole world had collapsed,” she said. “We lost all hope because 75 lakhs is a huge sum of money, and we never thought we would be able to find even a fraction of it.” And they didn’t even have the luxury of time – Ashen needed to go into the operating theatre by November 2019.
However, the family’s plight has inspired an outpouring of support from their community. Dilrukshi says they were able to collect some 30 lakhs thanks to published articles. “All the villagers have gotten together to help us as well,” she says, explaining that her neighbours take turns driving a lorry with a loud speaker that has huge posters about Ashen on its sides and speaks about this urgent need. Now ‘Cause Love’ hopes to help them raise the rest.
The fundraiser will feature pop-up stalls by Boxes by Ethnicity, Karved.inc, jewellery by Quaintrelle, hand painted greeting cards by Dinali, Toys Help, Jars By Anisha, MauChe Products, Chunky Monkey, Pop the Bling and Monster Cookies. There is also an open mic for musicians willing to contribute their talents.
Nimasha’s biggest inspiration remains the children themselves. “I get tears in my eyes just thinking of some of the kids that I knew before and now after their surgeries,” she says. “It’s like they become an entirely different person. Their physical appearance changes, and they begin to find a sense of individuality, without being confined to their hospital beds – like they had previously been. And also seeing the parents; a mix of relief and newfound hope for their little one’s future, which they previously thought wouldn’t even be a reality. It’s the purest form of love that has been given another chance to blossom – it’s indescribable.”
The Cause Love Fundraiser will be held at The Sooriya Village on September 21 from 10am onwards. Find out more on Facebook: @Cause Love or email email@example.com or WhatsApp on 0772291449 for more information.
First published in the Sunday Times, Sri Lanka on 15 Sept 2019. By Smriti Daniel. Pix courtesy Cause Love.