CRISTINA ODONE
By CRISTINA ODONE, whose parents’ battle to cure her little brother’s illness was turned into the Hollywood film Lorenzo’s Oil
There was no mistaking the anguish in the eyes of Chris Gard as he lay beside his desperately sick baby son, Charlie, clutching his tiny hand.
The photograph of the two of them on the front page of the Mail yesterday expressed better than words ever could the tragedy of a case that has moved millions of us.
An innocent child afflicted by a dreadful genetic disease, and parents determined to fight against the cruelty of nature — and the doctors and judges who would withdraw the life support he depends on — to give their son a shot at life.
On Tuesday, Chris Gard and Connie Yates lost that battle in the high Court. Mr Justice Francis ruled that eight-month- old Charlie should be allowed to die.
having considered the evidence and visited Charlie’s bedside himself, the Judge said that the rare form of mitochondrial disease had damaged his brain so profoundly, that there was no hope of improvement, not even with an experimental treatment in the U.S. that his parents had pinned their hopes on.
It was ‘with a heavy heart’, the Judge said, that he had come to his conclusion to allow ‘Charlie to die with dignity’. The plight of Charlie Gard — and especially that photograph of father and son — has raised a host of bittersweet memories for me.
My father Augusto wore a similar expression when he hovered over the bedside of his own beloved son, Lorenzo, who was also afflicted by an incurable genetic disease.
The cases are not exactly similar. Lorenzo, a previously healthy child, was six years old when he was diagnosed with adrenoleukodystrophy (ALD), a neurological condition. he survived until his death at 30 in 2008.
But the dilemma that faced Charlie’s parents is precisely the one that my father and stepmother Michaela faced 30 years ago: do we try to save our son’s life at all costs?
As Chris and Connie consider an appeal against the decision, I would like to share with them my family’s experience.
ALD gradually robbed Lorenzo of all his faculties — sight, hearing, swallowing, speech and mobility. Most boys with ALD (it is a disease carried by the mother and in its most serious form afflicts only boys) do not survive beyond a year.
But my parents refused to resign themselves to life without Lorenzo. They would fight to keep death at bay and in the meantime try to find a cure for ALD, or a treatment that would keep Lorenzo alive until such a cure was possible. The doctors laughed: neither my father nor my stepmother were scientists.
Incredibly, fuelled by love for their son, they discovered a nutritional oil therapy that kept Lorenzo alive for decades (and benefited thousands more boys with the ALD mutation), although it could not reverse the devastating brain damage ALD had already caused in my brother.
The remarkable achievement of two lay people in developing a treatment that had eluded scientists inspired a hollywood movie of their story, Lorenzo’s Oil.
CHARLIE’S story, too, has become a drama that has engaged the nation as his parents set about thwarting doctors who wanted to remove life-support, and raising money — more than £1 million through a crowd-funding appeal — to fly him to the U.S. where an experimental treatment offers a slim hope.
Like Lorenzo’s devoted parents, Charlie’s parents are clinging to the belief that while their son lives there is a chance he could benefit from future medical advances — possibly even a cure.
The existence of the American therapy to prolong his life — even though its inventor says it as ‘unlikely’ to make a difference — makes it all the more difficult for Chris and Connie to resign themselves to their son’s fate.
It may be a chance in a million, but to every parent their child is one in a million — and thus worth fighting for. As a Catholic who believes in the sanctity of human life, I especially applaud Chris and Connie for their conviction that everyone, whether brain-damaged or profoundly disabled, is worthy of love and a chance at life.
Theirs is a hugely courageous stand in a world that increasingly worships only those with perfect health and flawless beauty. But I also want to ask this young father and mother two questions before they pursue an appeal: who are they really fighting for and why?
For these issues were at the heart of my brother Lorenzo’s case. In their grief, my father and stepmother burned with zeal to beat the odds. They spent all night poring over medical tomes researching treatments, and all day beside Lorenzo, talking to him, stroking him, kissing and comforting him.
There was no respite for them — or Lorenzo. Sometimes I feared they had lost sight of my brother’s best interests, in the midst of their unremitting but demanding dedication.
They were hell-bent on a crusade to banish ALD, but Lorenzo was lying there enduring the torment. When their research led them to believe a diet might help, Lorenzo was put on a fast so onerous he began wasting away.
Then they tried powerful drugs that suppress the immune system; they did not work but Lorenzo suf- fered excruciating agony from their toxicity and their side-effects.
It struck me, when I heard his terrible cries, that our family lived parallel lives: on one hand, a father and mother on a mission to save their child; on the other, that child, whose quality of life was compromised. In the best of causes, but compromised nonetheless.
I remember an occasion when my father had been working night and day with a brilliant British chemist who came out of retirement to help him make the oil treatment. One night he forgot to take his turn at Lorenzo’s bedside. “have you forgotten this is all for
him, for Lorenzo, not for your personal campaign to find a cure!” my stepmother berated him.
One might argue that this is the position the medical establishment has taken up. They see Charlie’s parents so consumed by love for their son and a need to keep him alive at all costs, that they are failing to understand what is best for him — and an experimental treatment that may well cause pain is not in his interests.
But doctors, too, can forget the patient — and the family — in concern for their reputation.
We should at least ask why medics at Great Ormond Street hospital were so adamant that Charlie should not undergo further pointless treatment. Were they protecting themselves against failure?
WAS cost an issue? experimental treatments are expensive, as is keeping a child alive on life-support. Weighing up the pros and cons of delivering an intervention in financial rather than emotional terms is the exact opposite of the approach loving parents like Charlie’s have taken.
The legal profession has also played a role in Charlie’s story and one can question if it is right for a life- and- death dilemma to be played out in the court room.
Does it rob Chris and Connie of their right as parents to make a final decision about their son? Mr Justice Francis may well be capable of the wisdom of Solomon, but how can he really know whether Charlie should be denied that ‘slim’ chance of survival?
This is a hugely complex and highly emotional case and my heart goes out to Chris and Connie. But I would urge them, at this point, to pause and to take time to consider that, as desperate as they might be to hold on to Charlie, a life worth loving is not always a life worth living. Sometimes, there is no escaping loss. Cristina ODONE is a director at the Legatum institute.