By Cristina Odone Parental love CAN turn hell into hope
Tafida. The name means ‘Paradise’ in Egyptian. Yet what hell little Tafida Raqeeb, and her family, have been living through since blood vessels in the fiveyear-old’s brain ruptured in february, leaving her unconscious and on life-support in a London hospital ever since.
it’s been eight months of torture for her parents, Shelina and Mohammed Raqeeb.
The torture of helplessly keeping vigil at the bedside of their once bright and healthy girl now unable to speak or move gave way to even more agony – when doctors caring for her at the Royal London hospital in Whitechapel declared that her reduced quality of life had reached such a low that further treatment was futile.
it’s a medical decision her parents have fought with grim determination, taking their case to the High Court in a bid to prove that their daughter, who has a rare condition known as arteriovenous malformation, or aVM, which causes a tangle of blood vessels with abnormal connections between the arteries and veins, is not dying – but can actually see and hear them.
as Shelina, 39, told the court last month: ‘Tafida knows my presence. i’m the one who spends the entire day there, and i’m the one who sees improvements every day.’
Yesterday, their perseverance paid off in a sensational High Court hearing when Mr Justice Macdonald ruled that doctors were not allowed to switch off her life support.
Tafida’s parents, who now plan to take their daughter to the Gaslini Children’s Hospital, in Genoa, blinked back the tears on realising that they had succeeded where those of the terminally ill Charlie Gard and alfie Evans had failed.
for parents desperately seeking to save their child, the possibility of even limited recovery is enough to fuel faith in a miracle.
How i know, and understand that hope. for i also experienced the terrible conflict that pits parents against doctors within my own family.
The year was 1984 and my brother Lorenzo was just six years old when my father and stepmother discovered that he had a rare and terrible neurological disorder, adrenoleukodystrophy (aLd), that would rob him, in a few short months, of all faculties.
Bedbound and immobile, Lorenzo could not eat, or see, or hear. The specialists wrote him off: they counselled my parents to resign themselves to their son’s death within a year or two.
Just like the Raqeebs, my parents refused to accept the medical verdict. doctors, they believed, could only care so much. They were professionals motivated by the desire to do the right thing, to be sure, but who also had to ration their time and their hospital’s resources. To them, Lorenzo was an interesting and costly case study. To my parents, however, he was everything. Parental love proved a far more powerful fuel than professional competence, and despite having no scientific degree, my father found a therapy, now called ‘Lorenzo’s Oil’, that had eluded countless illustrious medical researchers. They knew that in aLd sufferers, fatty acids found in food and processed by our bodies accumulate and begin to corrode the myelin sheath that coats the nerve cells. Once the sheath is eroded, the nervous system breaks down, as do all bodily functions.
They resolved to find a way to stop the fatty acids from accumulating. incredibly, they did just that with a mixture of oleic and euricic acids, which they called Lorenzo’s Oil.
IndEEd,
such was the magnitude of my father’s scientific breakthrough that Hollywood made it the subject of the movie, Lorenzo’s Oil. it saved Lorenzo’s life – he lived for a further 24 years, dying in May 2008, the day after his 30th birthday – though it didn’t restore his faculties.
Like my parents, the Raqeebs also embarked on a medical odyssey despite no scientific background – Shelina is a solicitor while her husband Mohammed is a construction consultant – consulting doctors from around the world in a bid to save their daughter.
if there’s one thing my family’s tragedy taught me, it is that parental love can overcome all obstacles: other people’s indifference, bureaucratic delays, even lack of money (the Raqeebs raised £26,000 from friends and strangers to fund Tafida’s care and the costs of their court case after they were refused legal aid). Parental love transforms ordinary men and women into super-heroes, capable of astonishing feats.
i remember when Lorenzo’s weekend nurse was snow-bound. for 48 hours, my stepmother hovered by her son’s bed. When i asked how she’d survived, she shrugged her shoulders, and replied: ‘Mummy juice’.
We’ve seen the same extraordinary lifeforce in the parents of other desperately sick children – most notably, alfie Evans and Charlie Gard.
and while they lost their battles to save their sons – in both cases the courts refused to overrule doctors’ decisions to withdraw life support – their unflagging devotion inspired families everywhere.
The same is true of Tafida’s parents today. Their struggle to keep their child alive, for as long as possible, even if with limited use of brain and limbs, reminds us that quality of life is not determined by your ability to walk or raise your arms above your head.
Knowing yourself to be loved and cherished; watching or feeling your parents take turns at your bedside; hearing your older brother read from a children’s book: these are the elements that can turn the depths of hell into something resembling paradise.