The Bubble Baby of Sri Lanka, Sanjana Praveen Shivanka, is back at his humble home at Dippitigala, Lellopitiya in Ratnapura, after spending nine long months in India.
The bone marrow transplant that he underwent at the Apollo Speciality Hospital in Chennai is working slowly but surely, the Sunday Times understands, with his mother K.B.N. Damayanthi saying that most of the “blood counts” have improved. They will have to go back to Chennai in six months for a check-up while every three weeks Shivanka will have to be administered immunoglobulin. He has a daily dose of medication as well.
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Damayanthi and Shivanka returned to Sri Lanka on May 1.
Shivanka is suffering from the rare genetic disorder Severe Combined Immunodeficiency (SCID) Syndrome, to which two of his siblings succumbed as this humble family could not afford to take them to India for a bone marrow transplantation. It was due to the unimaginable generosity of Sri Lankans, both here and abroad, that Shivanka “stands tall” now, holding onto some item and attempting to take wobbly steps and both Damayanthi and husband K.W.N. Neil Shantha are ever grateful. “We remember each and everyone who sent us money when we offer pooja,” says Damayanthi with emotion.
“Abung,” Shivanka shouts, explains mother Damayanthi, adding that it is what he calls his food in baby language. While they feed him “beri” (mashed) rice and vegetables, they hope to introduce a little chicken soon and get him on regular rice and curry little by little. She also feeds him breast milk on the advice of the doctors.
Shivanka has a few words like “Amma” and “Thaththa”, says Damayanthi, explaining that he vigorously shows the eating movements with his hand when he is hungry and drinking movements when he is thirsty.
“He points to the potty when he needs to ‘go out’,” she adds.
Not having seen his ‘Thaththa’ for a long time he was reluctant to go to him when they arrived in Sri Lanka but on the way to Dippitigala when they stopped to buy some vegetables and Neil left the vehicle Shivanka began to cry, she says.Happy to be home, the threesome complete now, the worries weigh heavily on this young couple, for there is a huge debt they have to pay to Apollo Hospital.
Born in 2010, toddler Shivanka who turns two on July 12 is alive today due to the overwhelming support in cash sent by Sri Lankans, with the Special Fund set up by the Sunday Times swelling to an incredible Rs. 5.3 million.
It was with those funds and monies scraped up by Neil who toils hard to sell mattresses that Shivanka was taken to Chennai for this life-saving treatment.
Shivanka's plight was brought to the notice of the Sunday Times even before his birth by the kind-hearted doctors of the Human Genetics Unit of the Colombo Medical Faculty, who requested us to help save his life. With the appeals in the Sunday Times, there was a huge outpouring of concern that men, women and children from the far corners of the country and Sri Lankans scattered across the globe turned into currency.
They still need
your support
All the funds have been exhausted and Neil and Damayanthi are drowning in debt.
Happy that their precious son has not gone the way of their two older children to lie buried in their backyard, Neil has a Herculean task to perform – to find another Rs. 2.5 million to meet the unpaid bills at Apollo Hospital.
Please help us if you can, pleads Damayanthi, while Neil goes far and wide to sell mattresses. Otherwise, they have only one option, to sell their humble home and move into a rented place, the Sunday Times understands.
Sri Lankans have helped save this baby, please help his parents to settle their debts.
The Fund set up by the Sunday Times is still open. Please send your contributions to Account 0007283471(Wijeya Newspapers Ltd.) at the Bank of Ceylon, Lake House Branch, D.R. Wijewardene Mawatha, Colombo 10. |
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