We won, we won, we won, repeated Shelina Begum in a near state of shock, and blinking back tears as Mr Justice MacDonald announced that her gravely ill daughter could travel to Italy for treatment.

It is more than two years since Shelina walked victorious from the High Court in the knowledge she was free to take Tafida Raqeeb, five, out of the Royal London Hospital and transfer her to the Gaslini Children’s Hospital in Genoa.

Tafida, now seven, remains severely disabled by bleeding on her brain caused by arteriovenous malformation, a rare and un-diagnosed condition involving an abnormal tangle of blood vessels which had ruptured.

But her condition has steadily improved under the care of a dedicated medical team and she is able to breathe without a ventilator and communicate with her parents. She is effectively in rehabilitation – but it could have been so different. Indeed, many observers expected the family to lose their court battle, given unsuccessful earlier attempts by the parents of Charlie Gard and Alfie Evans to take their children out of the country for treatment too.

Tafida’s parents were prepared for it, having already received the same sort of gloomy prognoses about the prospect of their daughter’s survival from the day after she collapsed on February 8, 2019.

They were told that her chances of recovery were so minimal she would probably die during the seven hours of emergency surgery at the King’s Hospital in London. When her heart stopped and she went into a coma her family was told that if she did not die by noon she would certainly die within 24 hours.

Although scans revealed Tafida was not brain dead, doctors insisted she could never recover from her injury and decided that continued treatment was pointless.

“They sat us down and said: ‘Look, we are taking the decision away from you – any more treatment is futile’,” recalled Shelina. “They would be taking her breathing tube out and that would be it.”

But Shelina, a solicitor, and Mohammed, a construction consultant, felt uneasy about giving their consent. From their own research they discovered that the brains of children have a capacity for self-repair if granted sufficient time and treatment.

They grew increasingly resistant to pressure they say medical staff were putting on them to agree to the withdrawal of treatment, which included setting a date for Tafida’s death and burial and plans to remove her organs for transplantation (without their consent).

As Muslims, they asked an imam to visit Tafida and he shared their opinion that it would be wrong to end her life. They made inquiries into the possibility of transferring Tafida to the Gaslini for treatment and doctors there said they would treat her.

The NHS responded by using laws on “best interests” to refuse to release Tafida and to seek legal permission to end her life. What followed was a brutal and expensive court battle in which the NHS claimed the family were motivated by religious dogma, prompting Shelina to write to Pope Francis to request a meeting with him about the affront to religious liberty. In the end, Mr Justice MacDonald refused the application by Barts Health NHS Trust, which runs the Royal London Hospital, to remove Tafida’s ventilation and other “treatment” with the intention of bringing about her death.

The judge took account of the sanctity of life, the rights of parents and the importance of their religious beliefs when he concluded that it was in Tafida’s best interests “for life-sustaining treatment to continue”.

The family had to sacrifice almost everything, however, including their life together, just to help Tafida. Shelina has seldom left her daughter’s bedside in Italy while her husband and son have stayed behind in East London. Their experience has brought into sharp focus the inadequacy of a single brain-injury rehabilitation centre for the whole of the UK.

Shelina is now out to change that with the Tafida Raqeeb Foundation.

Her plan is to raise funds to build a £25 million brain-injury rehabilitation centre in Britain for children who are not offered the treatment on the NHS. Tafida’s family say £2 million has already been raised and are appealing for funds.

They launched the newly-registered charity in London where they unveiled plans for the hospital, which will include a paediatric neurological rehabilitation centre, capable of accommodating at least 20 young patients and which will treat children after a serious accident or illness. They intend it to be a world centre of excellence.

“I have spent the last two years inside a room with Tafida and I have experienced how resilient a child can be in fighting to recover,” Shelina said at the launch.

“Days were spent with her while the nights were spent thinking what could I do to bring changes to support children like Tafida in the UK. I constantly contemplated, ‘What can I do to support these children?’

“Recovery can continue for many years after a brain injury. So why should our children be deprived of this?

“The notion of ending life prematurely, based on predicting potential, needs to change and children like Tafida need to be given a chance.

“I am speaking from experience when I say that if Tafida had been given appropriate rehabilitation at the right time then her outcome could have been completely different.”

She said: “Anything could happen any time to any one of us. A sudden brain injury could happen to your child, as it happened to my Tafida, and it was completely out of the blue.

“As Tafida’s mother, I know first-hand how traumatic this situation is, and I want to give hope in this darkness. 

“There is a severe shortage of paediatric centres in the UK. I want to make sure more children have the same opportunity to fulfil their potential. We want to help to optimise recovery by offering the best therapy available in a purpose-built family-centred rehabilitation centre.

“We want to care for these children. The foundation will become the voice for the voiceless. We have initiated something for these children and need everyone’s support in making this centre a reality. Please let us have this centre for these children so other families don’t have to go through what we have gone through.”

The project has the backing of medical experts like Baroness Finlay of Llandaff, a crossbench peer who is a doctor, a professor of palliative medicine and a past president of the British Medical Association.

“No one can predict the future – prognosis is a probabilistic art at best,” she told the Daily Mail. “When a child has a brain injury, improvement can happen with expert rehabilitation, but is very unlikely without it. We need to give each child the best chance, when they could be helped back towards living well.”

Baroness Finlay is also supporting children like Tafida by sponsoring a “Charlie’s Law” amendment – named after Charlie Gard – to the Health and Social Care Bill that would allow parents greater freedom to take sick children overseas for treatment.

She is right to do so. The denial of medical care to gravely ill and disabled children in the UK is a continued source of scandal which must be brought to an end. The Tafida Raqeeb Foundation and Charlie’s Law surely represent the hope in the darkness that so many parents have so sorely craved.

For more information visit www.tr-foundation.org

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