On a spring day in 1994 doctors sat Lucia Gavrilita down and told her that her life was being ruined by her disabled son and daughter. Rather than waste their time with attempts to improve her children's condition, they stated bluntly, she should take up an offer to send them away to a state-run home.
It would have been easy for the languages teacher, at the time aged 22, to accept the brutally perfunctory advice of the medical professionals in her native Moldova. For decades the policy in this former Soviet satellite state, now one of Europe's poorest countries, had been to consign its disabled children to large under-funded and ill-equipped boarding homes where "care" consisted of sufficient food and medication to keep inhabitants docile.
Thousands of parents before Lucia had surrendered their offspring rather than face the life poverty and the absence of support that would follow if they chose to keep them at home. Those born different, she was told, have no place in normal family life.
But Lucia refused.
With this refusal, made despite the devastating effects of the rare genetic disorder that had struck her then three-year-old son, Calin, and one-year-old daughter, Elena, began a tumultuous and extraordinary struggle that brought this iron-willed housewife to the brink of suicide.
Remarkably, it has also transported her from the Stalinist tenement block on the edge of the Moldovan capital, Chisinau, where she lives with her family, to the neo-classical splendour of the office of the country's Prime Minister and her very own government ministry.
Some 16 years after the doctors first effectively told Lucia to dispose of her son and daughter, she has produced a remarkable transformation, not only in the destiny and treatment of her own children but for every one of the 15,000 special needs children in Moldova, by changing the nation's attitude to disability.
As well as providing the blueprint for a nationwide network of day centres run by parents and volunteers, she has used her surprise political appointment as Moldova's deputy disability minister to produce the country's first law laying down basic rights and standards for those with disabilities.
It is a battle to crush taboos and prejudices that she looks back on with a degree of disbelief as she sits in the headquarters of her charity, Speranta, housed in what was once her family apartment.
Speaking with the sort of unwavering candour that has become her trademark, she said: "After my children were born, we had a visit every three months to the hospital for treatment. But when my son was three, after one of these sessions I went to make my next appointment and was told that it was not a reasonable thing to do.
"The doctors said they could see no improvement and that it was waste of my time and theirs to continue. They said that I and my husband were still young and if we kept these two children it would destroy our life. They offered us places in an institution.
"At first, I thought maybe I should take their advice but then I looked at the homes and saw that Calin and Elena would not even be together because the institutions were for boys and girls. It was a terrible realisation – from that moment forth I decided I would fight for my children. I just didn't realise how hard I would have to fight."
From the start, the odds have been against Lucia.
Calin, now 19, and Elena, 17, were born with a congenital disorder of glycosylation which affects the body's ability to process proteins at a cellular level, resulting in multiple disorders ranging from a lack of basic reflexes, such as the ability to swallow, to a likelihood that any male sufferer will go blind by their 18th birthday. It is incredibly rare – there are just 200 confirmed cases in the world.
In 1991, when Calin was born, Moldova had secured independence following the collapse of the Soviet Union, but the Communist-era attitude that disabled children should be medicated and hidden persisted long after the disappearance of the politburo and a centrally planned economy. Lucia, now 38, embarked on a crash course in modern techniques to deal with disability, attending sessions for medical students at a specialist centre in neighbouring Romania and signing up at Chisinau's medical university. When combined with the 16 hours of daily treatment that her children required, it brought her – and her marriage – to breaking point.
Speaking in the fluent English she taught herself to understand medical text books, she said: "I was completely focused on the children. It was so demanding that we had no sort of home life. My husband wanted to leave – the marriage was too much. It was then that I decided I had to find other people with disabled children so we could help each other."
The result was what became Speranta. Lucia found a way round her hatred of cooking by making common cause with a mother who was a professional cook. Through a friend she found a mother of a disabled child who was a doctor and could perform physiotherapy.
Together this group of volunteers ran a day centre in Lucia's sitting room for six children, begging and borrowing equipment from foreign donors including the British charity Children on the Edge, and rapidly establishing an organisation built on an unblinking policy of professionalism. Lucia persuaded organisations abroad to send her qualified physiotherapists, paediatricians, psychologists and carers as volunteers to tutor her burgeoning organisation in state-of-the art techniques.
Within three years of its foundation in 1998, Speranta had opened two more centres and diverted dozens of children away from the inadequacies of state-run homes, where residents sleep in dormitories and receive little specialised care. As Lucia puts it: "If you enter one of these institutions with a mild disability, the likelihood is you won't leave and the disability will get worse."
Fired by her success with Speranta, Lucia was determined to demolish more of the structure built up by Moldovan society to exclude those with disabilities, securing a place in a mainstream school for Calin in 2000. The scheme has since mushroomed into Moldova's first to place special needs pupils in conventional secondary schools, offering 350 children a place in society that would hitherto have been denied them.
Lucia said: "Even today, I get people who ask me, 'Why do you try to integrate these children?' I tell them it is because they are human beings and human beings are social animals. They should be part of our society, not hidden away."
But despite the success of Speranta, fate was not finished with Lucia.
On 3 December 2007, Moldova's then Communist President, Vladimir Voronin, visited the care centre to mark International Day for Disabled Persons.
By the time he left the building, having been reduced to tears by what he said was the sight for the first time in his life of a disabled child smiling, he had offered Lucia a ministerial post in the government in charge of disabled affairs.
After debating whether to take the post, the woman who started her struggle on behalf of her children and slept on the floor of her sitting room after giving her home over to volunteers found herself negotiating the twisted corridors of political power in Moldova to change the law.
It has not been an easy process. Although senior figures such as Mr Voronin accepted her arguments that providing home-based care for the disabled would cost one-tenth of what the cash-strapped Moldovan government spent on its boarding homes, a mixture of obdurate bureaucracy and the global recession made obtaining the initial investment to reform the system an impossible task.
Recalling her arrival at the Ministry of Social Protection, Lucia said: "Suddenly, I was in this huge building where everybody wore suits. I found myself asking why God had put me in this place. I was a minister without a department. I wanted to create a department that dealt only with disability but this was during the economic crisis and everyone was being asked for cuts of 20 per cent. I was told to go to the Ministry of Finance, which I knew was the same as being told to go away."
What those who sought to obstruct the new deputy minister for disability did not bargain for was the fact that the new Minister of Finance was one Mariana Durlesteanu, Moldova's former ambassador to London and the mother of a disabled child. Lucia and Mariana had known each other for years, not least because the ambassador had been instrumental in obtaining help for Speranta from British charities.
Within a matter of weeks, Lucia had secured the investment she needed to start her department with a dedicated staff and began to draw up the first nationwide strategy enshrining in Moldovan law the UN Convention on Disability Rights, which confers basic state-funded entitlements on those with special needs.
Lucia left her ministry last year after a change of government but not before the legislation she created was passed into law. It is a monumental achievement for a woman who while battling in high office has had to continue meeting the needs of her children. She said: "The law is an instrument for change. It is an important step towards changing attitudes but only a first step."
International experts say that Lucia's success should not be under-estimated. Rachel Bentley, director of Children on the Edge, said: "She is one those rare individuals you meet in life, a mum who gave birth to two children with special needs who decided not just to help her own but all such children in her nation. A truly selfless, dedicated and inspiring woman, like social reformers of old, she has brought change to a nation and thousands of children's lives."
Beneath the apparently impregnable exterior, Lucia does not hide her vulnerabilities or the personal cost of spending nearly two decades in an uphill and at times overwhelming struggle.
Describing the point at which she realised that the baby Elena had the same disorder as her brother, Lucia said: "It was devastating. I was at the end of my tether. I cried for a week and I thought several times I would end my life. People can be cruel. I spoke to a priest and he told me that I had these children because I was paying the price for a sin, that it was a curse. I told him that I had had no time to sin – that I didn't drink, I didn't smoke and that the first man I kissed in my life was my husband. How could I be a sinner?"
By trial and error, Lucia has learnt to deal with her children's condition, which changes as they grow older. A recent crisis with Elena's ability to absorb calcium has been improved vastly by swapping to a strict vegan diet. while Calin's sight has been improved by the unorthodox method of eating quails' eggs.
But the true nature of her achievement is more elemental. In short, it will mean that never again will a doctor stand before a parent in Moldova and advise them to surrender their child to a state that wants to hide their offspring away.
Lucia said: "I lead a very busy life. I have to write down everything on 'to-do' lists. Otherwise it is overwhelming. But everything, absolutely everything, has been for my children."
The charities in this year's Independent Christmas Appeal
Children around the world cope daily with problems that are difficult for most of us to comprehend. For our Christmas Appeal this year we have chosen three charities which support vulnerable children everywhere.
* Children on the Edge was founded by Anita Roddick 20 years ago to help children institutionalised in Romanian orphanages. It specialises in traumatised children. It still works in eastern Europe, supporting children with disabilities and girls at risk of sex trafficking. But it now works with children in extreme situations in a dozen countries – children orphaned by AIDS in South Africa, post-tsunami trauma in Indonesia, long-term post-conflict disturbance in East Timor, and with Burmese refugee children in Bangladesh and Thailand. www.childrenontheedge.org
* ChildHope works to bring hope and justice, colour and fun into the lives of extremely vulnerable children experiencing different forms of violence in 11 countries in Africa, Asia and South America. www.childhope.org.uk
* Barnardo's works with more than 100,000 of the most disadvantaged children in 415 specialised projects in communities across the UK. It works with children in poverty, homeless runaways, children caring for an ill parent, pupils at risk of being excluded from school, children with disabilities, teenagers leaving care, children who have been sexually abused and those with inappropriate sexual behaviour. It runs parenting programmes. www.barnardos.org.uk
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