Your ‘Bubble Baby’ is 3 years old!
Flanked by his ‘Thaththa’ and ‘Amma’, he walks in unfazed by the small crowd of people in the large room. Clambering onto a chair all on his own, he kicks off his shoes and looks around. It is then that he spots the décor — clusters of bright balloons and bunting strung across the hall. Attention riveted on the balloons, he only has to ask for a “balumbolay” and several adults rush to untangle one from the cluster.
Look at him now! Shivanka enjoying all the attention at his birthday party. Pix by M.A. Pushpa Kumara
The décor, the large cake with a lovable doggy embossed on it and plates loaded with food on July 15 at the Colombo Medical Faculty are for a celebration. It is not only a celebration of a little boy’s birthday but a celebration of life itself and a celebration of the kindness and generosity of hundreds of men, women and children across Sri Lanka and the world.
The tiny baby whom all these people “adopted” as their own even before his birth is now three years old. Sanjana Praveen Shivanka, the ‘Bubble Baby’ of Sri Lanka, turned three on July 12.
The ‘Bubble Baby’ came into the spotlight when the Sunday Times took up his cause and set up a Fund to help his humble parents, K.B.N. Damayanthi and K.W.N. Neil Shantha of Dippitigala, Lellopitiya in Ratnapura to take him to the Apollo Speciality Hospital in Chennai, India, for life-saving treatment.
Baby Shivanka was suffering from the rare genetic disorder, Severe Combined Imm-unodeficiency (SCID) Syndrome, and life and death hung in the balance, with the only hope being bone marrow transplantation. Damayanthi and Neil had already suffered the ultimate agony of parents, for they had buried two of Shivanka’s siblings a few years before his birth.
Seeing the desperation of the parents, the kind-hearted doctors and staff of the Human Genetics Unit of the Colombo Medical Faculty, with a pivotal role being played by Prof. Vajira H.W. Dissanayake, brought the plight of this couple to the notice of the Sunday Times. With the appeals in the Sunday Times, the funds flowed in, swelling to an incredible Rs. 5.3 million.
On Monday (July 15), all those who had stood by the ‘Bubble Baby’ including Medical Geneticist Prof. Dissanayake, Consultant Paediatrician Dr. Samanmalee Sumanasena, Clinical Haematologist Dr. Lallindra Gooneratne, Dr. Jagathie Fonseka and Genetic Nurse P.K.D.S. Nisansala were there to celebrate his third birthday.
Their hearts’ desire: Mother Damayanthi and father Neil with Shivanka
Those whose presence was missed were Consultant Immunologist Dr. Rajiva de Silva, Chennai Apollo’s Consultant in Paediatric Haematology Dr. Revathi Raj and last but not least the silent majority who had dug deep into their pockets to save the life of the Bubble Baby.
It was on their behalf and as their gift that the Sunday Times presented the cake with the spotted doggy. Yes, the Bubble Baby blew out the candle with a little help from his parents and cut the cake, getting icing all over his fingers which he then tentatively put into his mouth, later wiping his mouth with a tissue, adult-like.
Chattering non-stop, running around the hall and crawling under the table to get his elusive balloon, precocious Shivanka was the cynosure of all eyes, with the Dean of the Medical Faculty, Prof. Rohan Jayasekera smilingly commenting that “he’s as tall as the table”.
Mother Damayanthi says that “akurukiyawalathiyenne”, while Shivanka pesters father Neil to remove each and every car from a container truck presented to him as a birthday gift.
Shivanka plays, repeats everything he hears and sings many songs, with his favourite being ‘Mage podithara’, says Damayanthi, explaining that he overturns his bike and attempts to remove the parts.
“Dangai, kiyana de ahanne ne,” she says, adding that Shivanka is very naughty and won’t listen to them. Neil nods in agreement, holding Shivanka close.
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