The battle to save his son has not ended
The battle has been long and intense…….being waged since 2002 and this father has been able to save his son from the very jaws of death. Now, he needs to keep death at bay.
Desperate father: U. A. S. Amarasekara. Pic by Anuradha Bandara
It is only 13 years after every single cent from the sale of the family’s property, the leasing of the printing machines of the father’s small business, generous donations from relatives and a few others has been spent on 18-year-old Thividu that U.A.S. Amarasekara is seeking public donations through the Sunday Times.
Having been advised by another parent at India’s Apollo Speciality Hospital, Chennai, who has been supported through funds collected by an appeal in the Sunday Times that Amarasekara pleads with us to write about his son’s tale of survival. This is the survival which has to be safeguarded for another three years to ensure that Thividu’s fresh lease of life is not snuffed out by an infection.
Amarasekara managed his small but successful printing business in Kalalgoda, Pannipitiya, while wife Priyangika ran their home nearby. It was when eldest son Thividu was five years old in 2002 and just begun his primary education at Lyceum International School in Nugegoda, that he began wheezing and they consulted Paediatrician Dr. Thamodini Liyanage.
While he was under treatment, the doctor realized that there was an iron deficiency and prescribed an iron tonic for a month after which she ordered a test, recalls Amarasekara.
The test results sent the family reeling – all counts, white blood cells, platelets and haemoglobin, were dangerously low and when issuing the report the laboratory suggested that they meet the doctor immediately. Panicking, he and his wife rushed their five-year-old to the Lady Ridgeway Hospital (LRH) for Children in Colombo, where a bone marrow test was performed, with the heart-rending diagnosis that their little boy was suffering from Acute Lymphoblastic Leukaemia (ALL), a cancer of the white blood cells. That evening itself as the child’s condition was “anathurudayakai” (critical), he was transferred to the Maharagama Cancer Hospital.
The LRH also indicated that there was successful overseas treatment, a fact confirmed by someone the desperate couple met while offering Bodhi pooja at the Kelaniya Viharaya whose son had faced a similar plight. He put them in touch with the group that was arranging such overseas medical care and within 11 days, Thividu was flown to the Apollo Speciality Hospital.
For three months, Thividu was in hospital undergoing chemotherapy after which his counts became normal. He was brought back to Sri Lanka for a month and returned to Apollo Hospital for another three months. The medical cycles continued with lumbar puncture and chemotherapy. “In 2005, however, he relapsed,” says Amarasekara, sending Thividu back to Chennai.
Thividu
By 2008, Thividu’s treatment ran its course and he went back to school, sitting for his Ordinary Level, oblivious that ALL was pulsing through his system once again. “The relapse came in 2014,” says Amarasekara, their hopes being dashed to the ground when the Chennai doctors informed them that the “only” way of survival for Thividu lay in a bone marrow transplant (BMT).
And so it was that they went back to Chennai in February last year for the bone marrow transplant, before which they had to find Rs. 10 million. The family was in dire financial straits, having sold whatever property they owned and even leasing out the printing machinery from which they were eking out a meagre living. Amarasekara had also taken huge loans, as much as Rs. 2 million, to keep his eldest son alive.
Massive support, financially, came from people and companies who had been in contact with Amarasekara through his printing work. They included the Chairman of ACL Cables Plc, Upali Madanayake and Managing Director Surein Madanayake and the Directors of Fab Foods Plc, Chandra Madanayake, Roshi Madanayake Perera and Hemantha Perera to whom the family is ever grateful.
Unexpected funds for the bone marrow transplant, meanwhile, flowed forth from Thividu’s school, Lyceum. All this while the family had not mentioned their son’s pathetic plight to the school, but finally did through Thividu’s Sinhala Master, Iresh. The school rallied round, under the prompt response of its Chairman Mohanlal Grero and Managing Director Kumari Grero, with not only Thividu’s classmates but also other children and parents chipping in to collect a whopping Rs. 8 million to ensure that he would be able to get the treatment he needed.
The BMT was performed a year ago, by Senior Consultant in Medical Oncology, Dr. T. Raja, who is also Coordinator of the BMT Programme, on August 16, with Thividu’s sister, 12-year-old Nepali, who had been born in Chennai earlier while the family was there for his treatment, being the donor. She was a 100% match for her elder brother. Thividu has another little brother eight-year-old Binul.
There had also been a small financial respite when both Thividu and Nepali were introduced to actor Surya while on a visit to the hospital and it was highlighted in the ‘Hindu’ twice bringing donations from the public.
But the family’s trials and tribulations are not over. A severe lung infection sent Thividu, whose immunity is compromised, back to Chennai in May this year. The latest challenge the family faces is how to abide by the advice of the doctors in Chennai that Thividu should be taken over there every three months to save him from infections which could be fatal.
This is while the family’s finances are at a zero-balance – in fact they are deeply in the red. Even though the bank has not been too harsh, seeing the mountain of debts he is confronted with and rescheduling his loans to get back his printing machines, those monies too need to be paid back.
For 13 long years, Amarasekara has not stumbled but now his brow is wrinkled with worry lines. “We couldn’t allow our son to go on a journey to the unknown and look on without doing anything,” says this father, adding that “maha sayura ikmava giya, idam-kadam, wasthuwa atha-arala (we have crossed the wide seas, sold our property and given up our valued possessions)”.
Race against time to raise funds
Help us please, says Amarasekara, seeking not only small donations from generous people but also printing work for him to be able to meet the mounting bills. As the frequent visits to Chennai loom, the next one being on September 15, it is a race against time to raise funds.
Donations may be sent to Savings Account No. 8290004444 at the Commercial Bank, Battaramulla branch in the name of U.A.S. Amarasekara. Father Amarasekara may be contacted on Mobile: 0779815755.