“I NEVER imagined, eight years ago, that I’d be one of those mums on the road driving her sons to training, but here I am taking them to swimming, basketball athletics – the twins have really lived up to the name Cork gave them when they were born: Little Fighters.”
Angie Benhaffaf, mum to formerly conjoined twins Hassan and Hussein, said her eight-year-old boys’ outlook on life was amazing; and that most of the time they carried her with their incredible spirit and positivity.
Speaking ahead of her seventh annual ‘Cork Wears Red for Straight Ahead’ fundraising lunch which takes place on Saturday, August 12, in the Maryborough Hote, in aid of charity ‘Straight Ahead’ that provides scoliosis surgery in Crumlin Hospital for time-critical children and Make a Wish Foundation, the mum of four said it hadn’t been the easiest of years for her boys.
Taking time to talk to the Evening Echo from Crumlin Hospital, she explained how the boys were having the ‘magic rods’ they had had inserted in their backs last year lengthened.
As Hassan suffers from congenital scoliosis, the most serious kind, he required a nine hour surgery to have the rod inserted October.
“He’s had so much surgery — I’ve lost count; probably around 50 medical procedures since he’s been born; it’s never-ending and sadly will never end.
“When I started my charity lunch — this year is my seventh year — sadly I knew there’d be no end for my little boys, but it’s nice to be able to change things for others.”
In the past six years she’s raised €50,000 to help children on waiting lists with scoliosis and in urgent need of surgery.
“‘Straight Ahead’ is a group of medical professionals in Crumlin who come in on their days off and work for free to perform surgery on people who have been on these lists, sometimes for years. It was founded by Pat Kiely, a nephew of the surgeon who separated the boys back in April, 2010, and who does all their spinal surgery.
“When I heard about the charity I knew straight away I wanted to support it and have raised €50,000 for life-changing surgery. This year we’ll give half of the proceeds to Make a Wish Foundation; last year we gave €4,500 to Bumbleance,” she explained.
In the lead up to the popular lunch, the family travelled to Great Ormond Street in London, where they attend a handful of times a year, for further procedures for Hassan and Hussein.
Sisters Milika, aged 14, and Iman, aged 11, always make this journey from their home in Carrigtwohill with the boys.
“We always all go to London together; it is hard for the girls to see their brothers in pain; but they’re a great support. I won’t lie, having children with a disability is hard but on the other side, it changes you as a person and the boys carry me a lot of the time when I see their spirit, even at their worst, they’re so happy and their outlook on life is so amazing.”
They started in second class in Midleton’s Educate Together in September and turn nine in December. Angie described it as a ‘great school.’
“They are both highly intelligent and heavily involved in sports; their wheelchairs never go into school and the prosthetics are worn every day. In fact they do more sports than their sisters.
“They’re involved with the Rebel Wheelers basketball team and Irish Athletics and travel around Ireland to compete in discus, javelin shotput and wheelchair track racing, and over the last few months have got involved in swimming. They tell me they dream of being Paralympians and doing Cork proud and I’ve no doubt anything they set their minds to, they’ll do; they never see themselves as sick children.”
Naturally, there are good weeks and weeks but Angie said that “right now, I see them happy in life”.
“But they know that hospitals will always be part of their lives and it’s not just a matter of them getting up in the morning and heading out the door. They have to wear special orthotic suits to keep their spines straight and get their prosthetics; life is very busy for them with physio at Enable Ireland and different appointments but that hasn’t effected them.
She described the brother’s relationship as “very special and so beautiful to watch”.
“Even though they have their own beds, they never sleep apart, only when one of them is having surgery. They still go left to right and snuggle into the same position they were when they were born.
“At school their teachers also pass comments on their bond; they never fight; they’re inseparable and they adore each other. It’s very hard on them when they have to be apart for surgery. Hassan was very low at one point after surgery this year and nothing was working; but within 10 minutes of Hussein arriving at his hospital bedside he was back talking again — it was like part of him hadn’t been there.
“I’ll never understand their bond; they’re more than just twins.”
Looking to the future, Angie said they’d face it with courage; adding that ‘together the six of us can get through anything.”
“The boys have their dreams like everyone else and that’s wonderful to see them so positive; I truly believe the world is their oyster; they have that fighter spirit and as they say themselves ‘Up the Rebels!’”
This year’s ‘Cork Wears Red for Straight Ahead’ lunch starts at noon in the Maryborough Hotel. Tickets cost €70 and include a prosecco reception; four course meal with wine; entertainment including magician/mentalist Liam Sheehan; Lounge Man Conor O’Shea; Karen Underwood and Ireland’s got talent winners RDC; goodie bags and prizes from the likes of Leonidas, Nandos and John Frieda.
There’s an amazing prize for best dressed Lady in Red worth €1,500, including a specially made diamond pendant from Marian Hilser Foley and a €200 voucher from boutique Phoenix V. There’ll also be a best dressed man prize.
See FB Cork Wears Red for Straight Ahead or call 086 8117536 for tickets.