It seems like the tragic tale of Patachara, but in a different time, a different place and different circumstances. Patachara lost but two children……….in the case of R.M. Chandrika Siriwardane, she has lost three and waits fearfully. Will the same fate befall her fourth?
The fourth, a mischievous little boy of seven, is afflicted with the same congenital disease that felled his older siblings – a sister and two brothers.
At the Lady Ridgeway Hospital (LRH) for Children in Colombo, engrossed in loading pellets into a toy revolver that relatives have gifted Thilina, nothing seems wrong with him.
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| What will be his fate? Thilina at LRH. Pix by M.A. Pushpa Kumara |
Bathui amberellai kanna one, he whispers to his mother as he climbs into her lap one minute and is back at play on the bed the next, while Chandrika explains that he wants to eat rice and curried amberella.
A cursory glance at the little boy reveals no illness, except a darkening of his face, around the mouth and the eyes and on the forehead.
The story unfolds amidst the sighs and tears of this 37-year-old mother who has suffered much. Married to R.M. Punchi Banda and living at Gaalmedigoda, in Katugaha, Pattiyagedera close to Bandarawela, life was fine for them, with the birth of daughter Nipuni in 1993 and son Harsha in 1995.
Things started going wrong in 1997, when Nipuni fell ill – struck down by a fever that wouldn’t let up.
The hospital rounds began then, firstly with Nipuni being taken to Bandarawela Hospital, then transferred to Badulla Hospital and finally to LRH as she was bleeding from the nose. The suspicions were that it was dengue but tests proved otherwise. Was it leukaemia? Nipuni was then sent to the Maharagama Cancer Hospital but to no avail. Nipuni was dead at three-and-a-half years, having been at LRH for nearly four months.
They buried her, finding consolation in the fact that they had to bring up Harsha. He sailed through Montessori for two years and had just started schooling when trouble hit the family again. By this time they had another baby boy, Nuwan, who had been born with a bone missing in his right hand which compelled frequent visits to the Orthopaedic Clinic of the Kandy Teaching Hospital. They had given up home and hearth and moved to a relative’s house at Matale. So when Harsha fell ill, it was to Kandy Hospital that they took him.
It was a blood test here that pointed them in the direction of a le amaruwa, says Chandrika, explaining that something was wrong with his blood. After a blood transfusion for Harsha, other tests including a bone marrow were carried out, it is learnt.
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| An anguished mother |
Back home and in school, Harsha once again developed symptoms of lethargy, with a second visit for another blood transfusion. This humble family was in the midst of a storm of sickness, beyond their comprehension. Their home was in disarray, their means of earning a living disrupted. Unable to cultivate the small plot of land they owned, husband Punchi Banda had joined the Diyatalawa Hospital as an attendant.
It was a Consultant Paediatrician there who suggested that they show Harsha to a doctor at the Maharagama Cancer Hospital where he was kept for nine months. “Amuthu kaluwak munata gehuwwa,” says Chandrika, explaining that there was a strange black tinge on his face, following which a test for iron in his blood indicated an overload.
By the time Harsha was sent to LRH he was very ill and it was with medication and no hope that they took him home. “He was painfully thin by then,” sobs Chandrika and it was on their way to a devale that “pana giye” (life ebbed from him). Harsha was seven years old at the time of his death.
Next it was Nuwan’s “deadly turn”. He too went to Montessori and also the first year of school. The tell-tale signs of “sudumeli wuna” (developing a pallor) made them rush him to Apollo Hospital in Colombo, from where he was sent to LRH and a blood transfusion. It was back at Apollo Hospital that Consultant Paediatrician Ajith Amarasinghe told them that what he required was a bone marrow transplantation to save his life. But that life-giving treatment was not available in Sri Lanka.
Earlier, oblivious that the spectre felling their children was a genetic factor, they had another baby – Thilina, their fourth in 2003.
While his parents began a hunt for a bone marrow donor whom they could take to India with them and also funds, Nuwan was receiving regular blood transfusions. “We found those with 90% compatibility but not 100%,” says Chandrika, adding in remorse that only the Hb factor was a problem with Nuwan, unlike her other two who had more complications. The foreigner running the Montessori that Nuwan had attended joined the desperate search for money to send him to India. But no bone-marrow donor could be found and Nuwan died at the Diyatalawa Hospital after a severe bout of vomiting and diarrhoea.
As he breathed his last in 2007, he had told his agony-wracked parents, “Mama merenna yanne”, sending his father slightly beyond the realm of sanity. The boy was 11 years old.
Mekada ape karume, asks Chandrika when the Sunday Times meets her at the LRH. Once again, this family is hurtling down the same precipice with Thilina that they did with their three older children, down into an abyss of death.
Wrapping him in a bedsheet and boarding a bus for Colombo, they had rushed him to LRH at the first signs of lethargy and pallor. Twice he has been given blood, while they hope and pray not only for a 100% matching bone marrow donor but also for funds to take him to India.
The foreigner who supported them during Nuwan’s battle for life, is back in England, herself very ill and unable to help them. As Thilina’s father struggles to work through the day at the Diyatalawa Hospital because money is scarce, wondering what fate has befallen his youngest son in Colombo, their half-acre “goda idama” has been mortgaged for Rs. 50,000 and their “kumbura” for Rs. 350,000 from the time of Nuwan’s illness and hospital stays. The debts and interest loom menacingly.
Thilina, as children do, plays with his toys on the hospital bed unaware that the grim reaper of death is hovering over him. “Maliththa iskoleta yanne”, he smiles shyly but endearingly. He has just got promoted to Grade 3, the books of which he has not even opened yet, for he has been in hospital since the new school year started.
Help us please to save our youngest, is the plea of this mother who has got more than her fair share of sorrow and heart-ache. “We will sell our land and beg from our neighbours,” she adds pleading with all those generous people out there.
Victim of Congenital Aplastic Anaemia
Thilina is suffering from Congenital Aplastic Anaemia, says Consultant Paediatrician Dr. Padmakanthi Wijesuriya under whose care he is in LRH’s Ward 4.
Also known as Franconi Anaemia, this is caused by a problem in the bone marrow which is not producing adequate numbers of all blood cells, red, white as well as platelets, she says, explaining that though it is present from birth it manifests about three to fours years later.
It is a rare inherited bone marrow failure syndrome, the Sunday Times understands.
There are only two treatment options, according to Dr. Wijesuriya. The permanent cure is a bone marrow transplant while the second option is symptomatic control with medication. “This is not a 100% but a temporary cure and has major side-effects.”
The answer which will give life to Thilina and hope to his parents to see him grow into a young man, is a bone marrow transplantation.
Then it was Bubble Baby, now Thilina
The story is different but the tragic underlying thread is the same – one family has lost three children, the other two. All these deaths and many more, due to genetic diseases, which may be redressed with bone marrow transplantations.
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| Shivanka: 7 months old yesterday |
Sadly, Sri Lanka with its much-vaunted health system has still no centre to carry out bone marrow transplantations and the impact is horrific.
For hundreds of parents the battle is not only looking after children with genetic diseases but also finding enormous sums of money to take them to the closest destination with such facilities in India.
Here it is Chandrika and Thilina, seven months ago it was Damayanthi and Shivanka. As Shivanka reached the milestone of seven months yesterday (February 12), the one and only factor that saved him from the clutches of death, was the generous outpouring of support from the readers of the Sunday Times, in Sri Lanka and abroad.
Their generosity saw the collection of Rs. 5.3 million for the ‘Bubble Baby of Sri Lanka’ which enabled his humble parents to begin the regimen of treatment needed to save his life by taking him to the Apollo Speciality Hospital in Chennai. If not…..the answer is too tragic to dwell on. We say a heartfelt thank-you to all our readers for their response.
That’s how Chandrika came to the Sunday Times seeking assistance for her fourth son. While sending out a plea for help, if you can possibly spare something (Thilina’s father, R.M. Punchi Banda’s account at the Commercial Bank, Bandarawela is: 8800010290), the time is also right for the health authorities to act.
Seeing the crying need of parents such as Chandrika and having the medical expertise in the country, we urge the Health Ministry to set up a bone marrow transplantation centre in Sri Lanka. It is a must right now.
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