We kissed her head and said ‘You’ve done it Tafi!’
The three huge gold balloons tied to the foot of five-year-old Tafida raqeeb’s hospital bed bear a single word: Congratulations. They look strangely out of place in the cold and clinical intensive care ward with its banks of flickering screens and medicine trolleys.
Nurses smile kindly as they move briskly around, yet it’s obvious this is a place where there’s usually precious little to celebrate.
But today Tafida’s jubilant parents are bubbling over with joy. On Thursday, Shelina Begum and Mohammed raqeeb won a historic legal victory which now allows them to take their little girl to Italy for treatment. Until that moment, it looked as though Tafida’s short life was going to end in this soulless room in the children’s intensive care unit at royal London hospital.
Instead, Judge Mr Justice MacDonald stunned the medical establishment by blocking the hospital’s bid to switch off Tafida’s life-support machine.
he ruled that it was right that difficult decisions should ‘be taken by a parent in the exercise of their parental responsibility’. As Tafida was not suffering, it was vital for him to consider ‘the sanctity of life’.
The couple’s lawyers — who spent five days arguing in court last month — say the ruling establishes that parents know best what care is right for their child.
It is in the starkest contrast to the tragic cases of Charlie Gard and Alfie evans, where judges sided with the NhS. Yesterday, the hospital announced it would not pursue an appeal.
‘I am still in shock,’ says Shelina, 39, a dignified woman who finds it hard to believe she has been catapulted into the limelight.
Talking for the first time since the judgment, exclusively to the Mail, she says: ‘ When the judge gave his verdict, I burst into tears. It’s the first time I’ve allowed d myself to cry in public. I was overwhelmed. All the stress and tension just poured out.
‘We have waited over three weeks s for the verdict and it has been n horrific — even harder than when n this all started. Privately, I’ve wept every night. On Wednesday I was so petrified that I paced all night.
‘I couldn’t banish the fear that Tafida a was going to get a death sentence. I kissed her goodbye and all I could say ay was, “Pray for life, baby.” ’
‘I knew the judge had listened very ry carefully to all our arguments and dI I have great faith in the justice system m — I’m a lawyer. But I was in such a state it took seconds for the verdict ct to sink in.
‘We aren’t deluded. We know that at — even with treatment — Tafida is very unlikely to ever be the same. e. But this gives her the best chance.
‘She was such an energetic, happy py girl with a big smile and a huge heart. rt. I don’t know whether she will ever er tear around on her bike again with her dad or whirl around the kitchen showing off her ballet steps.
‘But I hope and pray that one day she will run into my arms. Just to hear her call me “Mummy” again would be magical.
WHATEVER
happens — whatever adaptations we have to make — we will bring her home and love her. her life is precious and our love for her is unconditional. It isn’t based on what she can or can’t do.’ It’s impossible to know whether Tafida has a sense of the significance of what has just happened.
On life support, she cannot speak or do more than move her arms and legs a little. But, pointing at the balloons swaying gently in the slight breeze, Shelina says, ‘You’ve done it, Tafi. You brave girl. You’ve been Mummy and Daddy’s strength. You’ve done it,’ before covering the little girl’s forehead in kisses.
Tafida, an outwardly perfectly healthy, happy little girl who had just started school, was left brain damaged in February when a blood vessel burst in her brain.
It happened because she was born with the rare and undiagnosed condition AvM ( arteriovenous malformation), which causes a tangle of blood vessels with abnormal connections between the arteries and veins.
The shock for the family is unimaginable. For eight months they were forced to fight through the courts to give her a chance of life.
While they are proud that their victory may give hope to the parents of other desperately ill children, children uppermost in the family’s mind is that it clears the way for them to take Tafida to the specialist Gaslini children’s hospital in Genoa, Italy.
Doctors there, who have studied her case and seen 11,000 images, are confident they can offer treatment and are poised to send an air ambulance to collect her next week.
her father Mohammed, a 45-yearold construction consultant, was so ecstatic when the judgment came that he insisted the only way to celebrate was to buy the biggest balloons he could find and rush back to the hospital with them.
‘It’s Tafida’s victory,’ he says. ‘There have been so many times when the doctors said she was going to die — but she has always fought back. That’s why we have kept fighting.’
Tafida’s 14-year- old brother (who the family are choosing not to name) heard the news from friends.
‘We tried to ring the school. But we couldn’t get an answer,’ says Shelina. ‘By the time we spoke to him, he knew. he was over the moon. . . he’s so excited — we all are.’
Gaslini, on the northern Italian coast, is one of the top children’s hospitals in europe. In its neurology department Tafida will get an advanced rehabilitation programme, including hydrotherapy and state-ofthe-art robot technology, to help her to walk again.
Shelina says: ‘Tafida will paddle in the sea and even swim if she’s strong enough . . . She will get to feel the breeze on her face. It will be the first time she will have been in the fresh air since February.’
The family are well aware that going to Italy for six months will take a massive financial and emotional toll. Neither parent has been able to