Lellopitiya, Ratnapura – He is home from nursery. Sprawled on the rough cement floor with his book and pencil, he is not interested in writing the letter B. Lips pursed in concentration, pencil gripped tightly in his left hand, he is more interested in drawing butterflies. Admiring his work, he adds the finishing touches, the [...]

The Sundaytimes Sri Lanka

Bubbling with life

Remember ‘Bubble Baby’ or Sanjana Praveen Shivanka whom you the readers of the Sunday Times helped to send to India to seek treatment for a fatal genetic disorder? Kumudini Hettiarachchi visits his home on the eve of his fourth birthday

Lellopitiya, Ratnapura – He is home from nursery. Sprawled on the rough cement floor with his book and pencil, he is not interested in writing the letter B.

Lips pursed in concentration, pencil gripped tightly in his left hand, he is more interested in drawing butterflies. Admiring his work, he adds the finishing touches, the long, curvy antennae of the butterflies.

Sanjana busy with paint and brush. Pix by M.A. Pushpa Kumara

To my “silly” question of why he does not colour the butterflies his logical reply is: “Mal wala wahala peni bonawa. Paata karanna yana kota igilenawa. Kalabalawenawa.” (They are resting on flowers, drinking the honey. If I try to colour them they will fly away. They get disturbed.)

We are in the home of Sanjana Praveen Shivanka, the ‘Bubble Baby’ of Sri Lanka who turned four years old yesterday, July 12.
Walking into his spartan and nearly-bare home earlier, he goes through his routine like clockwork. Climbing onto a plastic chair, Sanjana removes his shoes and socks and takes them to the rack where a few pairs of shoes and sandals are kept. Then he brings a pair of trousers and asks his mother to change his school clothes, all the while chattering incessantly about this and that.

Out come the few toys in his possession – tiny ducks and hens on wheels, with the complaint that his little cousin who is visiting with his grandmother is dashing them on the floor.

Explaining that Sanjana takes apart his toys by removing all the screws with a toy screw-driver, father K.W.N Neil Shantha proudly tells us that he is also adept at putting them back together.

“Sanjana does everything on his own,” adds mother, K.B.N. Damayanthi, while urging him to sing a song.

But nearly-four (we visit him on Monday) Sanjana has a better idea. He knows that his grandmother has recorded him singing on her mobile, which he brings to us and tells me to move over, giving him some space on my chair, while he presses the mobile buttons and his lisping nursery rhymes, ‘Baa, Baa Black Sheep’ and ‘Twinkle, Twinkle Little Star’ fill their home.

As there is a hint of rain, Neil too is home for lunch, a simple but delicious meal of rice, mallun, breadfruit cooked in a thick milky curry, chicken-mirisata curry and papadam, followed by luscious mango slices, the couple insists we share with them.

Sanjana wants to be served and starts eating on his own but halfway through Neil has to take over and feed him.

Knowing that life is tough for this threesome, we instinctively feel that it is in our honour that there is chicken on the table, otherwise it would be an egg for Sanjana, while Damayanthi and Neil would make do with rice and a single curry.

Usually, Neil would be in his little lorry, going off the beaten track to sell not only mattresses but also other household items. “We sold our property and everything including the two lorries that we owned to meet Sanjana’s medical bills. We’ve started afresh now and have paid off all our debts in Sri Lanka but can’t save any money,” says Neil. They still have a debt of about Rs. 2 million to Chennai’s Apollo Hospital where Sanjana underwent a bone marrow transplant as it was not available in Sri Lanka then.

Both Damayanthi and Neil are quick to thank, from the bottom of their hearts, all those people who contributed whatever they could, ranging from Rs. 50 to Rs. 500,000 and more to the Sunday Times Fund which enabled them to take Sanjana to Chennai, India, to save him from the genetic disorder that sent his two older brothers to their graves as newborns.

With their world revolving around this little one, whom they nearly lost, if not for the generosity of men, women and children across the country and over the globe, life is still a struggle for this couple.

Let’s take a picture of you, Sanjana appears to be telling his little cousin

While Damayanthi takes Sanjana in a van to nursery at the Lyceum School in Ratnapura town and sits near the gate stitching something till 11.30 and it is time to bring him home, Neil goes from house to house attempting to sell mattresses or other household goods on a down-payment and monthly instalment scheme, having come to an agreement with a friend who owns a shop in the town.

“There is no other school close to our home which has up to Grade 5 and though it is difficult to pay the fees, we decided on Lyceum because our son is well looked after there,” explains Damayanthi who is set on giving the best education to Sanjana.

In the Upper Nursery of Lyceum which we visit earlier, the care and concern for Sanjana are obvious. He is one of the tiniest among the tiny-tots, as his limbs have not grown yet due to the medication he has been taking. “We’ve tapered off the last of the medication a few months ago,” says Damayanthi, adding that he should grow tall soon.

While Damayanthi does her “nursery vigil”, Neil goes as far as Kalmunai, Akkaraipattu and Ampara to keep the home fires burning and starvation from the door of their rented home. The blue forms he has printed for people to sign when they buy goods under the down-payment scheme are titled ‘Sanjana Enterprises’.

Paying a rent of Rs. 6,000 a month, they have been able to get a house about five-minutes down a steep pathway from the main Ratnapura-Lellopitiya Road. No vehicle can be taken to their home and when the area is lashed by rain, we can only imagine how they would access the hospital if the little one falls ill.

Father, mother and son, however, are a contented lot. They may not have the trappings that many posh homes in the towns would be cluttered with and the numerous toys that children would possess.

But Neil and Damayanthi have what they have been longing for……….their own precocious son, whom they never imagined but hoped against hope would fill the emptiness and loneliness in their lives.

With his baby chubbiness gradually falling away and Sanjana becoming his own little self, as they hold him close to their hearts, not only do Damayanthi and Neil offer pooja at the shrine of Lord Buddha in their hall but they also whisper a blessing for each and everyone who helped in their struggle to save him from the brink of death.

The little boy whom Lankans ‘adopted’

How can we ever thank all those people who helped us, asks Damayanthi, close to tears, while Neil mutely nods in agreement.


Yes, Sanjana Praveen Shivanka, the ‘Bubble Baby’ is the little boy whom generous Sri Lankans “adopted” as their own even before his birth when the Sunday Times took up his cause and set up a Fund to help his humble parents to take him to the Apollo Speciality Hospital in Chennai, India, for life-saving treatment.

His parents’ plight was brought to the notice of the Sunday Times by the kind-hearted doctors and staff of the Human Genetics Unit of the Colombo Medical Faculty. With Medical Geneticist Prof. Vajira H.W. Dissanayake playing a key role, the others who are responsible for Sanjana being alive today are Consultant Paediatrician Dr. Samanmalee Sumanasena, Consultant Clinical Haematologist Dr. Lallindra Gooneratne, Consultant Immunologist Dr. Rajiva de Silva, Dr. Jagathie Fonseka and Genetic Nurse P.K.D.S. Nisansala and Chennai Apollo’s Consultant in Paediatric Haematology, Dr. Revathi Raj.

Currently, he is under the care of Consultant Paediatrician Dr. Ruwangi Dissanayake of the Lady Ridgeway Hospital for Children and Consultant Paediatrician Dr. Lanka Tennekoon of the Ratnapura Hospital.

The appeals in the Sunday Times to save the ‘Bubble Baby’ who was suffering from the rare genetic disorder, Severe Combined Immunodeficiency (SCID) Syndrome, brought in funds amounting to an incredible Rs. 6 million.


They still need help


Anyone who wishes to help the family of the ‘Bubble Baby’ may send in their contributions to the Savings Account No. 9366145 at the Bank of Ceylon, Pelmadulla branch, in the name of his mother, K.B.N. Damayanthi.

The parents may be contacted on Mobile: 0725041548.

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