Parish and community rally to save Baby Evelyn

Baby Evelyn Mary Alex Santhana who successfully underwent an ABO-Incompatible Liver Transplantation procedure in New Delhi, safely returned with her parents on May 12.

May 26, 2023

By Gwen Manickam
Baby Evelyn Mary Alex Santhana who successfully underwent an ABO-Incompatible Liver Transplantation procedure in New Delhi, safely returned with her parents on May 12.

After spending several months at the Apollo Hospital, Baby Evelyn will continue her follow-up appointments at the University Malaya Medical Centre (PPUM) clinic as her white blood cells are not up to par.

In January this year, the local Catholic community and friends caught wind of the plight of 10-month-old baby girl, Evelyn Mary Alex Santhana, diagnosed with a rare disease called biliary atresia, through a social media appeal for funds by Fr Michael Chuah. Biliary atresia is a condition which blocks the tubes that carry bile from the liver to the gallbladder.

Baby Evelyn’s young parents, Ilavarsee Muniandy and Alex Santhana were in turmoil as the Kasai procedure carried out in July 2022, when she was less than three months old, was not successful. The procedure, done at the Kuala Lumpur General Hospital (HKL), was to prevent the baby’s liver from malfunctioning due to the disease. Its failure resulted in her needing a liver transplant.

The baby’s parents were sadly deemed unsuitable donors, as Evelyn’s blood type is O-positive while Alex’s B-positive and Ilavarsee’s A-positive. The underweight infant was put on a waiting list until a suitable donor was found.

After consulting doctors, the parents transferred Evelyn to PPUM, where she could be tube-fed with a special baby formula while waiting. Baby Evelyn’s health was not improving, her tummy was swelling and she was constantly battling jaundice.

It was here that the parents learnt their baby could have a procedure called ABO-Incompatible Liver Transplantation. This procedure enables people of different blood type to be donors. HKL, the only hospital capable of doing the procedure here, had a long waiting list and the light at the end of that tunnel was not visible.

Another option was to have the procedure done in a hospital in New Delhi, India at an estimated cost of RM300,000. Ilavarsee was also told to get in touch with the Johorbased Mudzaffar Shah, founder of NGO Biliary Atresia Malaysia Association (Pertubuhan Biliary Atresia Semalaysia) for assistance.

 The home maker and her husband Alex, who works as a lorry driver bringing home RM2,000 a month, needed funds to support their daughter’s mounting medical bills.

The Church steps in
The Catholic couple approached their close friend, Fr George Harrison, currently in Rome, and he directed them to the Parish Integral Human Development Ministry (PIHDM) coordinator at the Church of the Visitation, Seremban, as they were familiar with a similar situation. When the parish found that the family belonged to the Church of the Holy Family, Kajang (HFK), the parents were redirected to contact its PIHDM coordinator, Sarveswaran Subramaniam, in mid- October 2022.

Sarves said the parents only reached out to HFK in mid- December. “We quickly arranged a meeting with our parish priests,” said Sarves.

Deeply moved by the family’s quandary, assistant priest, Fr Bonaventure Rayappan, who baptised Baby Evelyn when she was two months old, was eager to find ways to help. Yet he had to move with caution.

After multiple discussions, Fr Michael proposed setting up a committee to manage this crowdfunding project. The priests also consulted Archbishop Julian Leow.

“Bishop said, raise what you can, if it’s not enough, comeback and see me. That built our confidence to start the project,” said Fr Bona.

He knew it would be an uphill task to raise the full amount, but was eager to help in any way possible. They also set up a phone line managed by parishioner Chitra, so the public could call for enquires.

Let’s save Baby Evelyn
Upon ironing out the details, Fr Michael posted a brief message on his social media feed on Jan 21 evening about the baby’s dire situation and parish PIHD banking details with the tag “Let’s Save Baby Evelyn”. Within hours, the account received more than RM161,000. It wasn’t sufficient, but the team was thrilled to see how quickly the amount was raised. The committee assumed the quick influx of funds would slow down, but low and behold, people’s generosity exceeded the required amount within a few days. As of 9.00am on January 26, they collected RM315, 997.58.

In another social media message, the parish said, “any surplus of funds after deducting both local and foreign medical expenses for Baby Evelyn’s treatment, we will transfer the balance of funds to the next child suffering from Biliary Atresia requiring a similar procedure.” Several print media approached the parish wanting to highlight the cause, only to learn that the amount had been successfully raised.

Fr Bona said some parishes came forward and pledged up to RM10,000 from their PIHD funds. A few corporations also made sizeable contributions but almost 80 per cent were personal donations.

“Donations poured in from people of different races and religions. Some donated RM1 to RM2. Some gave RM1.15, assuming there might be processing fees. I see and cherish the heart of the people and the spirit of the community,” said an elated Fr Bona.

Mudzaffar Shah was a huge help to the parish and the parents. He was responsible for coordinating the logistics in India and the parish’s liaison with the medical team at the Apollo Hospital.

Treatment in India
The family left for India Feb 21. After initial hiccups and smoothing out legal procedure through DNA testing to ensure the donor was related to the patient and no organ harvesting was involved, the transplant was done on March 14, three days after Baby Evelyn’s first birthday. Although both parents were tested, Alex turned out to be the best donor option. Two months later, Evelyn and her parents returned home. The baby is not out of the woods yet and will be monitored by a medical team at PPUM.

Fr Michael recently posted another message on social media to welcome the family back and share their appreciation to the rakyat.

 “Once again, a big thank you from the parents of Baby Evelyn to all well-wishers, donors and the team members who had looked into fund raising and coordination of this whole project. A special word of thanks to En Mudzaffar Shah.

“I am both humbled and surprised by the outpouring of support for this cause. I must admit that I was initially sceptical as to whether we would be able to raise this large sum of money within a short period of time as we were racing against the clock to get Baby Evelyn to India to undergo this procedure while this was still viably possible. But thank God for the many individuals who stepped forward and stepped up, with many just donating RM10, which helped us reach our target within four days. To give you an indication of the volume of people who supported this cause, the team of volunteers who helped with issuing receipts expended over 30 books of receipts. What I saw was the face of humanity, which did not look at this cause from any specific racial or religious lens. They just saw a baby who was struggling to live and her desperate parents determined to give a fighting chance to their then less than a year old child,” Fr Michael told HERALD.

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