The 10-year-old lies straight on his back, unable to flex his body or speak. His large, bright eyes, however, reveal the intensity of his agony and his parents know that he not only understands but feels every word they say.
Whenever they murmur to relatives that the doctors have said there is no cure for his ailment, tears gather in his eyes and course down his cheeks.
It was not so long ago that K. Yohan Lahiru was up and about, even going to school, until this illness affecting his nerves slowly and surreptitiously crept up on him leaving him disabled.
When Sandamali Perera, 36, married K. Sunil Shantha, a soldier, more than 10 years ago, life stretched ahead of them filled with happiness and promise. Fulfilment came with the birth of their first-born son, Lahiru. They bought a tiny strip of marshy land, just 7.5 perches, the only thing they could afford, at Liyanegemulla off Seeduwa with hopes of building themselves a small but comfortable home after obtaining a bank loan.
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| Then (left) and now (above): Full of smiles and motionless now. Pic by M.A. Pushpa Kumara |
It was about two years after Lahiru was born that Sandamali and Sunil realized that everything was not right with their baby. “He didn’t walk on the soles of his feet, but on his toes,” recalls Sandamali. The hospital visits started then and doctors told them, after a CT (Computed Tomography) scan, that “mole wardanaya adui” (that the development of the brain was slow).
Yet, they persevered and sent him to Montessori and later to the special education section of a regular school. Over time his disabilities increased. “When he came to a set of steps, he just wouldn’t climb them. He never rode a bicycle,” says Sandamali with sobs wracking her body.
Then the falls started, whenever he walked or ran, with the movement setting him in a spin and then making him drop to the ground. By Grade 3, they were unable to take him to school even in a trishaw as he simply could not hold on. Desperate but not willing to give up, they brought a teacher home. Their expenses were immense, what with the addition to their family of their second son K. Anton Lasith and the health needs of Lahiru.
On the advice of the village clinic health personnel, Sandamali and Sunil found their way to the Human Genetics Unit of the Colombo Medical Faculty and met Prof. Rohan Jayasekera who put them in touch with Consultant Paediatric Neurologist Dr. Jithangi Wanigasinghe of the Lady Ridgeway Hospital (LRH) for Children, Colombo.
Explaining that Lahiru is suffering from a neuro-degenerative disorder which is genetically inherited, Dr. Wanigasinghe when contacted by the Sunday Times says that although there is no cure for it and the degeneration is irreversible, there is medication to reduce the involuntary movements and keep him comfortable. However, infections could make him take a turn for the worse.
It was a fever that struck down Lahiru that left in its wake the rapid physical decline, according to Sandamali. Lahiru’s whole body became bunched up, his mouth sagging open and he could not swallow.
When doctors suggested that a feeding tube be inserted into his stomach, terrified of the operation, Sandamali and Sunil refused and when they heard that he could not be cured of this disorder of the nerves, they tried the only other option they thought was available to them – ayurvedic medicine. For seven months they took him to Kandy, hoping against hope, but to no avail.
Frightened when his condition worsened and he went into violent jerky actions and remained flat like a board, they rushed him back to LRH, weeps Sandamali.
Could any more tragedy affect their lives? Yes, fate or karma, whatever it may be, seems to have more pain and sorrow for them. For their second son Lasith who is nearly five now is showing the same symptoms, sighs Sandamali who is overcome by worry. She and her husband are not relatives. They are not even from the same village…….. “katha karala bende” (it was an arranged marriage), she says, adding that no one in their families has this kind of ailment.
From about nine months ago, Lahiru is confined to bed, with a smile only rarely hovering near his lips. Silent tears, of course, flow most of the time. His liquid diet is now through a tube connected to his stomach as he cannot eat or drink.
He understands everything happening around him, says Sandamali sadly. “When he hears his father’s trishaw he looks longingly at the door, if we get ready to leave the house he cries because he fears that we will leave him behind and if we pay too much attention to the Malli he seems upset.”
The family’s finances too are in a deplorable state, what with only Sunil being the breadwinner and Lahiru’s needs such as diapers costing a lot. They have been compelled to buy a special trishaw as Lahiru cannot be taken any other way but in a flat, sleeping position. The varikaya (monthly-instalment) is Rs. 9,850 and has to be paid for 12 months.
Trapped in a half-built home, with a large unbuilt drain on one side, a 20-foot canal on the other while being hemmed in by a 10-foot road and also the Katunayake Expressway, Sandamali cannot let her younger son out into the garden alone. Their home seems to be on the verge of collapsing and securing a bank loan for a more permanent abode has become an elusive hope.
As the whole of Sri Lanka greets the brand new year of 2012 with hopes and dreams, bleak is the future for this humble family of four, with the elder son bedridden with no cure and the younger son inexorably slipping down the same path.
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Please lend a helping hand to this family which is contactable on Phone: 0773335224 or at their home at 154/7, Nelaboda Road, Liyanegemulla, Seeduwa.
Kind donors may send their mite to Account No. 024020034918 at the Hatton National Bank, Negombo branch.
Such help will improve the quality of life of Lahiru, it is learnt. The medications, some of which the parents have to buy are expensive and if they can put him in diapers it will keep his bed dry. Financial assistance will also allow them to buy more nutritious liquid diets for him and take him for physiotherapy which would make his stiff limbs slightly pliable. It would also support them in their trishaw-loan repayment. |
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