Charlie’s Fight

I’ve been following the Charlie Gard story with bated-breath and open ears. As soon as you hear that a case concerns an 11 month old baby, you start to listen. When you learn that it involves the parents’ right to treat their son, you can’t stop listening.

Charlie suffers from the rare genetic mitochondrial disease that affects his brain, muscles and ability to breathe, among other horrible (understatement) things. He has severe progressive muscle weakness and cannot move his arms, legs or breathe unaided. Great Ormond Street Hospital (GOSH), where he is being looked after (and whose care Charlie’s parents haven’t faulted) believe that his condition is terminal, and therefore are driven to turn off his life-support. Charlie’s parents, however, disagree. Because of their opposition, the case has gone to court. Part of his parent’s driving force, is the opinion of a doctor who offers a treatment that has had fairly high success rates on 18 other people with Charlie’s condition. However, these patients had the other strain (TK2) of Charlie’s disease (rather than RRM2B). GOSH’s experts argue that it will not work on Charlie, and is pointless- though a professor of neurology, who could not be named for legal reasons, estimates the chances of improvement to be at least 10%.

The sheer THOUGHT of having Ottie’s health care taken out of our hands honestly makes me feel sick- as in, I genuinely have an anxiety-driven lump in my throat typing this. I cannot imagine the indescribable pain that they are going through as parents and fundamentally, as people. If someone told me that O had even 0.01% chance of improvement/recovery, I would bloody well take it because I don’t think I could live with myself feeling that I hadn’t done everything that I possibly could. That’s what Charlie’s parents are doing now. His mother has done so much research into his rare condition that she is being allowed to participate in the consultants’ meeting along with neurologists and other paediatric specialists – a posse of people whose brain power could shift a mountain.

Though to most of us this seems like a clear-cut case, can we dismiss the opinion of our country’s specialists – the brightest brains/ experts in this field, who don’t think that the treatment should be administered? The emotive nature of this case means that Charlie has garnered support worldwide from the Pope, who has offered to treat him in his own hospital within The Vatican, to Donald Trump (who’s motives are probably questionable- hopefully I’m being cyncial….. I doubt it). There are also those of the opinion that, even if it doesn’t help Charlie specifically, it will contribute to medical advancement and help others with his (very rare) condition. GOSH don’t dismiss this argument, but on their website state that their duty of care is over the individual patient, not the future collective.

As a new mum, this has been weighing heavily on my mind. Listening to the latest updates on the case in the mornings on the radio (we accidentally stumbled onto LBC and now its our station of choice) inspired me to try and do something to help others who are going through this kind of pain myself. I googled local charities and emailed sending my CV and offering my assistance- anything I could do to help, from home, with Ottilie. I’m so excited because I’m meeting with REACT, a charity for children with terminal illnesses, and INS, for people with neurological disorders this week. I can’t wait to see what these meetings bring and will update you accordingly.

I’m bound to have mislaid information and misquoted facts here, but hopefully my main point is clear- if the worst this treatment will do is nothing, and this baby’s parents want to try it, can pay for it, and at least some medical professionals think there is a fairly high chance it will be successful and are willing to perform it, there really is only one right answer. The judge will make his decision on the 25th of July – a week from today, and I really hope that Charlie’s parents aren’t disappointed.


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