EXCLUSIVE: FIRST PICTURE SINCE COURT RULING
Eight months after doctors told them to let their little girl die, Tafida’s parents share the triumphant story of their landmark court win – and plans for the journey that could yet bring a miracle
work for months. through crowdfunding they are seeking to raise £400,000 for the costs of treatment, travel to Italy and legal costs. So far, they have raised over £35,000.
While they are in Italy, their son will stay behind with family members. Shelina and Mohammed are at the centre of a huge and loving family who all live in upton Park, East London.
‘It’s not ideal but he understands it’s necessary. He adores his little sister so much he even wanted to make his own appeal to the judge,’ says Shelina. ‘We will miss him desperately. But he will fly out to see us at weekends.’
Mohammed is acutely aware of the sacrifices to come. ‘I worry about the toll it is taking on Shelina and my son,’ he says. ‘She has been amazing — even stronger than I realised. And he has been a star. I am so very proud of him.’
In reaching his decision, Mr Justice MacDonald made it clear that he was moved by the obvious devotion of tafida’s family.
But the couple are the first to admit that until February 8 there was absolutely nothing to mark them out as anything other than completely ordinary.
‘ tafida was sleeping in our bedroom and just after five in the morning she woke me and said, “Mummy, my head’s hurting,” ’ recalls Shelina. ‘Her eyes were fixed on the ceiling. She wasn’t moving but tears were rolling down her cheeks and she was struggling for breath.
‘Mohammed had gone out for an early-morning jog. When I called out in panic, my son came. I asked him to call the paramedics. I was so distraught that he had to talk to them. He got tafida on the floor and started doing CPR —pushing on her chest to keep her alive. He had learnt the technique in school. He saved her life. She took a breath, her pulse came back just as the paramedics rushed in.’
MOHAMMED
arrived home to find his daughter being put into an ambulance. ‘I still can’t really believe it,’ he says, his eyes welling up. ‘I think I will wake up and find it’s a nightmare.’ tafida went through a seven-hour operation at London’s King’s Hospital and was in a coma. Outside the operating theatre, the consultant was frank.
‘He told us: “She only has a one per cent chance. Most likely, she is going to die on the table” ’ recalls Shelina. ‘We were in agony.’
But while tafida survived, her condition has been unpredictable.
the morning after the operation her heart stopped. She went into a coma and the family were told if she had not died by noon, she would die within 24 hours. But to the family’s intense joy a brain stem test showed that, although tafida had sustained a brain injury, she was not brain dead. ‘that was the best moment,’ recalls Shelina.
After two weeks, tafida opened her eyes for the first time. the family started researching the condition. A birth defect, AVM is caused where blood vessels do not form correctly and can rupture.
In the brain, the effects are similar to a huge stroke. Around ten babies a year in England are affected, although the condition may not be picked up until later in life. the family learned that AVM patients like tafida go into a deep coma but can slowly emerge as the brain builds new connections.
In April, tafida was transferred to Royal London Hospital. In June the medical staff concluded that any more treatment was pointless. ‘they sat us down and said, “Look, we are taking the decision away from you. Any more treatment is futile,” ’ recalls Shelina. ’ they would take her breathing tube out and that would be it.’
the couple have spent eight months camping out beside tafida. their ‘home’ is a single bedroom with shared facilities in a house provided by a charity. Shelina has not set been home since February.
‘Most days I am with tafida from 8am until midnight when Mohammed takes over,’ she says. ‘If I can’t be there — because of seeing lawyers — family step in. We don’t want her ever to wake up and feel frightened or wonder, “Where’s Mummy and Daddy?”
‘Walking into the hospital I always take a deep breath. Although the staff are kind, it still feels wrong. I’ve made her bed a little oasis of calm. She has her toys, including a teddy I brought back from Italy and the pink cushion she used to cuddle up on, saying princess.
‘If she’s asleep, I call her name and she wakes to my voice. Her pupils open wide and she looks at me. I brush her teeth and plait her hair. It’s waist-length now.
‘then I chat, pray and read to her. I have a Disney book about princesses. And we watch Frozen, her favourite Disney film, at least twice a day.
‘ Staff haven’t mentioned the case. I’m not angry with the hospital. I am just upset they have put us under such needless pressure and wasted so much of our money and theirs.’
Most of us will never know how it feels to be in Shelina’s position. But few of us would argue that she deserves to feel vindicated.
‘I remember reading about those other cases — Charlie Gard and Alfie Evans — and thinking that parents should be allowed to have the final say,’ Shelina says. ‘But never in my wildest dreams did I think it would happen to us.
‘this has been a victory for all parents. It shows that parents’ rights won’t be taken away. And it recognises the value of disabled children. tafida might be profoundly disabled but her life is still of value.’
FOR more information or to donate to the fund, go to www. gofundme.com/f/save-tafida