Independent Appeal: Changing attitudes and lives
A special needs centre in Romania is credited with miracles
Friday 24 December 2010
On Christmas Eve three years ago, Mihaela Hagima went into labour fearing that her cruel history was about to repeat itself. After two late miscarriages, her baby was arriving after only 25 weeks of pregnancy.
But against the odds, Alexia was born alive later on 24 December – the day Romanians celebrate Christmas – weighing less than a bag of sugar.
The premature baby was so tiny that her first meals consisted of 0.5ml of milk – the size of a raindrop – administered from a syringe.
Three years later, Mihaela sits with her beaming, chatty daughter on her knee and blinks back tears of disbelief. "Alexia was my Christmas Day miracle. Look at her now. I had lost two other babies, so when she came so early, I was without hope.
"She was so very small and in the first few days the doctors didn't know if she would survive. In previous times, to arrive at 25 weeks was a miscarriage. But she survived. She is my joy, my hope, my everything."
That Alexia is the thriving child she is today is thanks to another small wonder. After three months of intensive care in a neo-natal ward in the city of Iasi, in north-eastern Romania, Mihaela was allowed home with her child, with a warning that she faced a life of disability.
Like most parents in this impoverished region, Mihaela and her husband were offered little or no support for their daughter, and Alexia failed to progress. At 12 months of age, when many children are walking, she was still struggling to sit up.
Then Mihaela heard about Sansa Mea, a special needs centre in a suburb of Iasi run by Olimpia Macovei, a diminutive powerhouse of a doctor who has spent her life battling to modernise the Soviet-era instincts that once consigned the country's disabled children to the very worst of the notorious orphanages and boarding homes built by the regime of Nicolae Ceausescu.
In a spotless building surrounded by 1960s Communist apartment blocks, Dr Macovei has spent 12 years applying a philosophy that would have been alien to her predecessors: the importance of early intervention by professionals ranging from physiotherapists to psychologists to diminish, sometimes dramatically, the effects of disabilities on children between six months and three years of age.
Sansa Mea has been supported since its inception in 1998 by the British agency Children on the Edge – one of three charities supported by donations from Independent readers in this year's Christmas Appeal.
The result at Sansa Mea is as far away as it is possible to be from the faceless and cruel institutions of the Ceausescu era, where children with disabilities were hidden away in often barbarous conditions, tied to beds and left to cry themselves into a profound state of disturbance.
Brightly lit and painted, the Sansa Mea centre combines a special needs facility with a kindergarten where disabled and able-bodied children mix together from an early age.
Dr Macovei, as big hearted as she is determined, said: "You must never judge a growing child, especially one with a disability. You don't know what that body will become; after all you don't judge a flower or a tree when it is a seedling do you?
"From a very early stage in my career I saw that the earlier you intervened with a child with disabilities, the better the results. And this is particularly true in this crucial early period of life – therapies should begin as early as the second day of life. We should not underestimate the ability of the body and mind to repair itself."
With its mixture of professional and practical help (parents on the lowest incomes are offered extra food to build up the strength of their children), Sansa Mea achieves impressive results.
When she entered the centre two years ago, Alexia was unable to crawl and had missed a series of developmental stages. She now walks unaided, feeds herself and was happily reciting a Christmas poem on the day I visited.
Mihaela, 37, a hospital finance officer, said: "On our first day here I carried Alexia into the building stretched out in my arms. She could do very little and we didn't know to what extent she would catch up. But we have fought every day and this place has been wonderful. Children learn from each other. Now Alexia is normal for a child of her age."
Such transformations are exceptional but organisers at Sansa Mea, which means "My Chance" in Romanian, operate on the basis that even the smallest improvements are valuable and can dramatically improve quality of life. The centre has seen 141 children with disabilities and special needs ranging from cerebral palsy to autism to Down syndrome pass through its doors. Unsurprisingly, there is a waiting list.
Dr Macovei, smiling as she plays with two-year-old Alex, whose cerebral palsy was diagnosed as being so severe that doctors told his mother he was "a lost case", said: "We would be nowhere without organisations like Children on the Edge. You have to realise that even today the prevailing attitude in Romania is that disability is something you deal with by going to the doctor for tablets to control the condition. There is little recognition of the need to stimulate and interact. We have to change attitudes as well as the fate of these children."
Dragos, a five-year-old boy with profound neurological disabilities, is proof of the validity of Dr Macovei's ethos. He was locked in his own world when he arrived at the centre, barely able to crawl. Today he talks freely, bouncing off the walls with energy. Mariana Botez, his mother, said: "When I spoke with him, he would stare fixedly ahead. He was trapped inside himself. The combination of therapies and being with other children has worked a miracle. Now we have a little person we can talk with."
"Miracle" is a word that is heard often at Sansa Mea. But Dr Macovei says the changes that she and her colleagues bring about, such as the ability of a child to feed themselves or go to the toilet, are gained by hard work rather than divine intervention. Above all, she says, the centre is about repairing a legacy that drove children and the parents apart. "These mothers have been through a lot before they reach us. You could make a pillar of salt out of the tears of these women. We work for the children and for their parents."
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
Charity auction raises £65,500
The results of The Independent's 2010 Christmas charity auction are in. A fantastic £65,534.05 was raised (almost twice the total of last year's auction) with the proceeds being divided between Barnardo's, ChildHope, and Children on the Edge. Many thanks to all bidders for your extraordinary generosity, and congratulations to the winners...
Lot 1: A day at the paper, K Moyse, £1,606.
Lot 2: Day at Lord's with Angus Fraser, G Brown, £4,000.
Lot 3: Lunch at Westminster, N Sinclaire, £1,519.
Lot 4: Travel advice, T Jackson, £461.
Lot 5: Somme tour, K Goswell, £2,750.
Lot 6: New York tour, A Bennett-Jones, £1,735.
Lot 7: Cocktails with Mark Hix, K Burke, £2,250.
Lot 8: Wine tasting, A Van Hoogstraten, £971.
Lot 9: Restaurant review, R Curtis, £1,040.
Lot 10: Garden advice, F Martin, £3,500.
Lot 11: Dog training, B Murphy £685.
Lot 12: Day with Richard Bacon, S Simkiss, £1,370.
Lot 13: Elton John signed album and Gary Hume artwork, Anonymous, £922.
Lot 14: Backstage at a gig, G Brown, £4,200.
Lot 15: Theatre trip, A Dautch, £650.
Lot 16: Deborah Ross interview, F Martin, £1,827.
Lot 17: Your Money makeover, F Martin, £1,120.
Lot 18: John Walsh interview, N O'Sullivan, £1,012.
Lot 19: Robert Fisk lecture, Mishcon de Reya, £2,951.
Lot 20: Johann Hari's East End tour, K Jaeger, £1,901.
Lot 21: Film screening with Claudia Winkleman, F Martin, £3,600.
Lot 22: Neil Warnock football day, G Brown, £2,610.
Lot 23: Lunch with the editor, K Burke, £1,720.
Lot 24: Night on the party circuit, N O'Sullivan, £604.90.
Lot 25: Sport photography, J Hill, £670.
Lot 26: Sport report, M Eales, £700.
Lot 27: Pub quiz, V Dowty, £410.
Lot 28: Dinner cooked by Yasmin Alibhai-Brown, J Ruffles, £1,550.
Lot 29: Mark Steel lecture, S Greenhalgh, £1,700.
Lot 30: Virginia Monologues, P Kerr, £621.15.
Lot 31: Beauty makeover, G Switalski, £750.
Lot 32: London Fashion Week seat, J Fraser, £1,900.
Lot 33: Sally Ann Lasson cartoon, P Vaja, £710.
Lot 34: Night at the ballet, F Anderson, £915.
Lot 35: Day at Queen's Club, F Martin, £5,100.
Lot 36: Brian Viner interview, R Brown, £941.
Lot 37: Golf with Dom Joly, R Hodsden, £940.
Lot 38: Alex James cheese tasting, R Clarke, £1,082.
Lot 39: Howard Jacobson novel, with a character named after you, S Dussold, £1,700.
Lot 40: Dinner with James Lawton, M O'Rourke, £840.
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