A teenage life destroyed by blood cancer

IRA SHISHAKOVA: Lost somewhere in the mists of the battle about nuclear power, and its force for good or ill, are the human …

IRA SHISHAKOVA: Lost somewhere in the mists of the battle about nuclear power, and its force for good or ill, are the human stories of those whose lives it has destroyed. It has almost certainly destroyed Ira Shishakova, aged 17.

She is one of the rare ones who has a certificate to say so. The photograph on it shows a pretty teenager with abundant hair. It was taken when Ira was around 13, when she first contracted blood cancer. The doctors in Minsk assessed her history, noted the fact that she was from Gomel in the most contaminated area of southern Belarus, and certified that her illness was Chernobyl-related.

In terms of cause and effect, her case is probably no more or less compelling than those of the other 41 terminally or chronically ill children on Nurse Alla Barsukova's books. They all live in Gomel. Others were simply not as "lucky" as Ira in finding doctors prepared to put their suspicions on paper.

Gomel doctors, it is said, are far less inclined to sign the Chernobyl certificate, known as Article 18. It has implications for benefits, meagre as they are. The suspicion is that the health service could collapse under the weight of claims from the south.

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Barsukova, an experienced hospital nurse, who studied medical psychology and has a particular interest in children, is passionately concerned about her young patients. At 35, every day of her working life is spent climbing the stairs of deeply depressing apartment blocks around Gomel to tend to the needs of dying children and their grief-stricken, inevitably impoverished families.

Her salary and her patients' requirements - such as nappies, dressings, family telephone costs, fruit and special dietary needs - are funded by Adi Roche's charity, Children of Chernobyl Project International (CCPI).

Her long list of duties, carefully typed, includes helping to celebrate birthdays and remembering to choose and bring a gift.

Ira turns 18 on Wednesday, a significant birthday. Legally, she will become an adult, an event that should trigger celebrations. But for her and her mother, Ludmila, it means that they lose the $50 (€40.63) monthly carer's allowance, a sum that is all that stands between them and penury.

Ira's health benefits include hospital care and treatment for the actual cancer site. The catch is that if there are other complications - to her lungs, for example - caused by the chemotherapy, she must pay for that medicine herself. Once she turns 18, she gets no other benefits, despite her Article 18 certificate and her certificate of invalidity. The implied state policy is that she should get a job, but as her mother points out, even if Ira was well enough to work, "who's going to take on a girl with such a history?".

Ludmila (49) looks far older than her years. She gave up her factory job three years ago to care for her daughter, as there was no one else to help (her husband and troublesome sons have left). Much of that time has been spent in hospitals with Ira.

Despite the certificate from the Minsk doctors, Ludmila blames herself for Ira's illness.

"When she started having bronchitis, I didn't give it as much attention as I should," she says, her eyes filling.

Since the age of 13, Ira has endured four courses of chemotherapy. The last one ended only two weeks ago.

We talk about how the two of them might survive after Ira's birthday. Ludmila has been told of a legal loophole, whereby she could go to court and apply to foster her own child, in which case she would be entitled to a payment.

What no one says is that Ira is dying. Her teenage years have been destroyed by the cancer, her education cut short, her lovely hair lost twice over. There is no lift to the fifth-floor apartment, a challenge to her aching joints. Her weekly hospital check-ups involve travel on several buses. And she will probably be dead well before her 19th birthday.

Now she sits in their little apartment, with an old picture of Britney Spears on her bedroom door, the living-room sofa crowded with furry toys she is collecting for a hospital. She takes a girly pride in her false nails, perfectly applied

and painted. She's even able to joke shyly about her baldness, noting that it's cheaper on shampoo and hairbrushes.

She says everyone tells her she looks better without hair, but they only said this after she had lost it.

Beyond the door of the loving little world provided by her mother is another one that will challenge her on every step to her grave.

But she will celebrate her birthday on Wednesday. Alla Barsukova and Adi Roche's charity will see to that.