Look at our ‘Bubble Baby’
Big brother: Sanjana with malli Tanel and below, a collage of the Sunday Times articles
No more a baby, he is facing the Ordinary Level (OL) examination right now with confidence.
Remember the ‘Bubble Baby of Sri Lanka’ for whom the Sunday Times campaigned and all you generous readers took up as your own – responding in numerous ways, to enable him to have life-saving procedures in India.
Sanjana Praveen Shivanka, the son of K.B.N. Damayanthi and K.W.N. Neil Shantha of Lellopitiya in Ratnapura is now 15 years old.
“I had the Buddhism paper today and it was good,” he tells us on the phone on Tuesday, soon after returning home.
Sanjana will be sitting for nine subjects, says Damayanthi, indicating that like most teenagers he is unpredictable, studying on and off. He is currently showing an interest in IT and mathematics.
The couple whose family now also includes another three-year-old boy, Tanel, has moved from their earlier home in Dippitigala to close by Welimaluwa. While Damayanthi stitches mosquito nets, husband Neil handles the marketing side, taking them in his trishaw to shops, sometimes going as far as Horana. This is how they put food on the table and give Sanjana the educational support he needs.
Damayanthi says that in the run-up to the OLs, she has not been able to bring Sanjana for treatment to the Lady Ridgeway Hospital (LRH) for Children in Colombo for his leg issues. She will do so as soon as the examination is concluded. There are no major health concerns for him.
The Sunday Times touched the lives of Damayanthi and Neil when she was expecting Sanjana, way back in 2010, after the Human Genetics Unit of the Faculty of Medicine, University of Colombo, reached out to us to help this couple who had faced a double tragedy.
They had already lost two of their baby boys – Vishwa Dinura Devmeth in 2005 soon after birth and Dinura Vinod in 2007 just four months after birth – to the rare genetic disease of Severe Combined Immuno-deficiency (SCID) Syndrome. Unborn Sanjana too was a victim of this condition.
In our very first piece headlined ‘Give them the joy of parenthood’ on July 4, 2010, we spotlighted the heartbreaking tale of how the couple had buried their two older boys within a short span of two years. The tiny graves in their garden were a grim reminder of what would befall their third son too.
In SCID Syndrome, the body’s immune system’s cells especially B-cells are affected, making the person extremely vulnerable to life-threatening infectious diseases spread by viruses, bacteria and fungi.
The answer is bone marrow transplantation which delivers healthy bone marrow stem cells (immature cells) taken from a compatible donor to the patient after his diseased bone marrow has been destroyed. These stem cells from the donor will then produce healthy blood cells – red blood cells (which carry oxygen to tissues), white blood cells (which fight infection) and platelets (which help in blood clotting).
This condition is also called ‘Boy in the Bubble Syndrome’. The name came about in the 1980s when David Vetter from Shenandoah, Texas, America who was born without a working immune system became famous when doctors placed him in a plastic isolation unit to protect him from infections. His brother had died of this syndrome earlier. David lived in this “bubble” for 13 years but died in 1984, following an unsuccessful bone marrow transplant.
For Sanjana- born on July 10, 2010 – the Human Genetics Unit had made arrangements to send him to the Apollo Hospital in Chennai, India, for this procedure as it was not available in Sri Lanka at that time. However, Damayanthi and Neil did not have that kind of money, the millions and millions of rupees needed for the procedure.
This is when the Sunday Times set up a Special Fund and our readers rallied round and raised the funds required, for Sanjana to have the full regimen of treatment.
Sanjana is thriving due to Sri Lankans, living here and abroad, digging deep into their pockets to help a humble couple enjoy the joys of parenthood.
…….And so, the ‘Bubble Baby of Sri Lanka’ now 15, is testament to those numerous donations, support and prayers of this nation.
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