As you climb a steep concrete road at Dippitigala, Lellopitiya off the Pelmadulla-Colombo Main Road, the cries of a baby hearten you. New life, holding out hope of childhood, youth and adulthood -- hope awaiting fulfilment.
But in the home of K.B.N. Damayanthi and K.W.N. Neil Shantha there is also a tangible fear, fear of a young life, just a month-old slipping away. The home is of Sanjana Praveen Shivanka, the ‘Bubble Baby of Sri Lanka’.
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| Shivanka: Blissfully ignorant of his predicament. |
Stacked on the outer verandah of the home is the father’s “business”, brightly coloured mattresses which have to be sold for this family to earn a living. Inside, the home is bare except for a few plastic chairs and a table, cleared of what little furniture this couple had, to keep out the dust.
For Shivanka, like other babies cannot even catch a cold, for that will bring about his death, as he is suffering from Severe Combined Immuno-deficiency (SCID) Syndrome, a rare genetic disease.
No visitors are entertained in the baby’s home and even the two grandmothers, maternal and paternal, who help Damayanthi, wear face masks before entering the room where Shivanka is kept.
As the Sunday Times photographs him from a distance, he has just been suckled by his mother. She lays him gently on the bed in a room lovingly painted blue by his father who has put blue and white plastic sheeting to safeguard Shivanka from the bare asbestos roof.
Baby Shivanka smiles in his sleep healthy and secure for the moment, but for how long?
The family has done everything within their means to protect their third baby son, from following his two elder brothers who are no more….victims of SCID, whose graves they see everyday.
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| The parents: Joy mixed with
tangible fear |
Shivanka needs an urgent bone marrow transplantation, for which he has to be taken to India, with all arrangements being made by the Human Genetics Unit of the Medical Faculty of the University of Colombo.
His parents, however, do not have the wherewithal to meet the cost of Rs. 3 million for this procedure which will give him a chance to change the course of destiny.
And you our generous readers can have a hand in changing his destiny by contributing your mite and stopping inexorable death from snuffing out this babe.
Every cent will count, so please make the account set up by the Sunday Times swell to save Shivanka’s life:
- Bank: Bank of Ceylon
- Account Name: Wijeya Newspapers Limited on account of Damayanthi’s baby Shivanka
- Branch: Lake House branch
- Account No: 0007283471
- Swift Code: BCEYLKLX (for foreign remittances)
The collection as of Friday stands at Rs. 1,608,235
A school shows the way
A spot announcement on the last day of school by Principal Ranjini Fernando at the closing assembly, with a poster about this tiny Bubble Baby displayed close by, saw coins and notes ranging from Rs. 50 to 500, being dropped by the children of the Yoshida Shokanji International School at Sapugaskanda, Makole to a few rough tills being passed around.
“Moved and touched” by the plight of baby Shivanka, the Principal thought she would teach her protégés, around 450 from Grades 1 to the Advanced Level, a lesson in caring and helping those in need.
The Sunday Times was honoured when we were invited to the school on Friday and the donation of Rs. 10,000 towards saving baby Shivanka was handed over to us.
When showed a photograph of the baby the Sunday Times had clicked just the day before at his home, emotion among the parents and children gathered there was palpable.
The donation will not end there, Mrs. Fernando promised us. Every Thursday, we have a special meditation programme for students from Grades 6-9 and we’ve decided that the pirikara collected will be for this baby, she says.
We hope other schools too will follow suit, she urges.
The school’s Chairman is Ven. Banagala Upatissa Nayake Thera, President of the Sri Lanka Maha Bodhi Society and Chief Sangha Nayake of the Sanchi Viharaya in India. |
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