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Sunday, October 23, 2011

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It is a proud moment in any parent’s life but for Angie Benhaffaf, the doting mother of former conjoined twins Hassan and Hussein, it was so much more.
The day, two weeks ago – when she bought each of her identical toddlers their first pair of shoes – was the day she also dared to see a normal future for both of them.
Hassan and Hussein were born on December 2, 2009, but were joined from the chest to the pelvis and given virtually no hope of survival.
Proud parents: Angie and Azzedine with Hussein, left, and Hassan, wearing their new legs
Proud parents: Angie and Azzedine with Hussein, left, and Hassan, wearing their new legs

They shared the pericardium around the heart, a liver, bladder, gut and intestine, had one kidney each and only two legs between them. Five months later they were separated at London’s Great Ormond Street Hospital in a 14-hour operation so complex that the odds against them surviving were more than a million-to-one. But the boys, from Cork in Ireland, have been nicknamed the ‘Little Fighters’ by Angie and her similarly proud husband Azzedine for good reason.
Earlier this month Hassan and Hussein were each fitted with a prosthetic leg and last week medical experts said they could walk unaided as early as next year. It is an extraordinary milestone in their already remarkable young lives.
‘It was hugely emotional, something we once thought we would never see,’ says Angie of the moment their legs were fitted.
'I dream of them walking in to class on their first day at school.' 

‘The boys both cried because they wondered why we were putting these strange things on them.
‘And we both cried too – it was a huge moment. The reason they got this far is because they do everything together and they spur each other  on. They have an incredible bond and that is  their secret.
‘I have great dreams for them but they are dreams I know will come true. In time they will get a knee joint put into their prosthetic limb, which will enable them to fully use the leg.
‘Wouldn’t it be amazing to see them walk through the door when they are four at their first day of school? They both love football and I would love to look out into the garden and see Azzedine kicking a ball about with his sons. I might even try to set up a team which caters for children with prosthetic limbs, so they can play regularly.’
Angie was first encouraged to seek prosthetic limbs for the boys by Heather Mills when they met on a talk show in January 2010.
The boys’ legs were subsequently designed by Irish-born Kevin Carroll, a world-renowned  prosthetist whose work is now highlighted in a  Hollywood movie, Dolphin Tale, with Morgan Freeman portraying him.
The film was released this month and tells the real-life story of how a baby dolphin, which had been abandoned by its mother after its tail was severed, was fitted with an artificial tail by Carroll and taught to swim again.
Carroll, 53, worked tirelessly with colleague Dr Dan Strzempka from his base in Sarasota, Florida, for four years, fitting more than 50 tails to the badly wounded mammal, which they named Winter, as it grew.
Tragic: The twins conjoined at three months. It is hoped they will be walking unaided soon
Tragic: The twins conjoined at three months. It is hoped they will be walking unaided soon
To help Hassan and Hussein,  Carroll teamed up with Mike Fouhy, from SOTA Prosthetics in Cork, and used the latest computer-generated technology to design the boys’  artificial limbs, which are made from titanium, aluminium and carbon fibre. SOTA took charge of the  production of the legs – but for  the Benhaffaf parents everything hinged on Carroll’s assessment of  the twins when he came to visit them  last month.
He was hugely impressed by the boys’ physical development and  suitability for new limbs yet it was something more intangible that he most admired.
Carroll said: ‘I found them truly remarkable. They have an extraordinary spirit, energy and drive about them – more than in anyone I’d ever assessed before.’
Angie, 37, and her Algerian-born husband Azzedine, 39, a former chef, are full-time carers to the boys and their elder siblings, Malika, seven, and four-year-old Iman.
And it is easy to see why the couple, who live in a village near Cork, are now so hopeful about the future.
Last week, Hassan and Hussein were both wearing their legs – which their tireless parents can attach as quickly as changing a nappy – and were scampering around the floor.
They climbed several times up on  to the living room sofa before crawling at lightning speed into the kitchen to open cupboards as they hunted  for chocolate.
Angie has every reason to believe her boys are destined for great things – it was confirmed earlier this year that the miracle twins have exceptionally high IQ levels. Professional assessors, who examined the boys’ mental agility with a series  of puzzles and tests, were dumbfounded after they recorded a near-perfect score. 

Moments later the boys were back in the living room, scrambling in and out of their toy pedal cars, before delighting their proud parents and adoring sisters by throwing and kicking a football to each other. ‘It’s amazing how mobile they are,’ Angie says. ‘I don’t think of them as dis-abled, in fact I never did.
‘Only a few weeks ago, I rushed out to the hallway after I heard Malika and Iman cheering. Both boys had managed to climb to the top of the stairs on their own and they were beaming with pride and wanted to do it again. I really never thought I’d need a safety gate for my stairs because I never thought the boys would be able to do that.
‘But these boys will do exactly what other kids do, only better.’
She has every reason to believe her boys are destined for great things – it was confirmed earlier this year that the miracle twins have exceptionally high IQ levels. Professional assessors, who examined the boys’ mental agility with a series  of puzzles and tests, were dumbfounded after they recorded a near-perfect score.
What made the results even more astounding was that the twins were born six weeks prematurely in  London and had spent months in an intensive-care unit – two factors medical experts expected to hold back their mental development.
The more outgoing Hassan, whose character is most like his bubbly mother’s, often finds himself on the naughty chair while the more cautious Hussein has more of his father’s reserved persona.
‘When they were first fitted with the prosthetics, Hassan got into it straight away whereas Hussein, true to character, looked at it and analysed it a bit more,’ Angie says. ‘Even the surgeons who separated them at Great Ormond Street Hospital used to nickname Hussein  “The Professor” because he examined everything.’
Perfect match: One of the legs made specially for the Benhaffaf twins
Perfect match: One of the legs made specially for the Benhaffaf twins
It was Hassan’s ‘bold streak’ that worried his parents shortly before they met the Queen and Prince Philip earlier this year during their historic state visit to Ireland.
However, their fears of boisterous behaviour were unfounded and the private meeting with the Royal party went smoothly.
The constant attention from well-wishers is now part of their lives but it is something Angie and Azzedine never tire of.
Chatting with people in the street provides a brief but welcome break from the hectic round-the-clock  caring and non-stop appointments for physio, occupational therapy, cranial massage and even hydrotherapy treatment that are part of their gruelling daily routine.
‘I always get stopped wherever I go and we appreciate it every time because the people of Ireland and Britain have taken these boys to their hearts and so many people prayed for them after they were born,’ says Angie. ‘People have such love for them and it means so much to us because they were with them from the start.’
At present the boys wear their artificial limbs for just over an hour a day as they become accustomed to the new feeling of having a big chunk of metal and plastic attached to them.
Talented: Kevin Carroll has fitted Winter the dolphin with a prosthetic tail and continues to perfect the design as the mammal grows
Talented: Kevin Carroll has fitted Winter the dolphin with a prosthetic tail and continues to perfect the design as the mammal grows
Blockbuster: A scene from the movie about Winter's miraculous survival which stars Morgan Freeman, centre, and Harry Connick Jnr, right
Blockbuster: A scene from the movie about Winter's miraculous survival which stars Morgan Freeman, centre, and Harry Connick Jnr, right
Intensive physiotherapy sessions with specialist machinery at home and with specialists from the Enable Ireland disability centre have been stepped up. The hope is they will gradually learn how to walk with a frame, then sticks and crutches.
As their strength and co-ordination improve, the plan is to move to one stick, then one crutch and, finally, to the much longed-for moment they take their historic steps alone.
And right up to adulthood their prosthetic limbs will need replacing several times a year as they grow.
Hussein can expect to recover from postural scoliosis – curving of the spine – through the special orthotic suit he wears as an under-garment each day.
But his brother will soon require delicate surgery on his spine to treat his more serious congenital scoliosis, a result of abnormally developed vertebrae.
Hassan will become the youngest-ever patient in Ireland to undergo the surgery – but Angie has no doubt he will clear this hurdle too.
And the boys have a special treat to look forward to next year – swimming with Winter the dolphin.
‘I’ve invited the boys and, with the progress they have made already, it’s quite possible they could be walking unaided by then,’ says Kevin Carroll.
Mum Angie smiles as she agrees, saying: ‘I wouldn’t be surprised if they do swim with the dolphin next year. They have overcome so much in their short lives that I know they can achieve anything.’
lLittle Fighters: The Million-To-One Miracles by Angie Benhaffaf, published by Gill & Macmillan, priced £12.99

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