On July 28th, a few days before his first birthday, Charlie Gard died in a series of heartrending events that drew worldwide attention. So widespread was this, that it got Pope Francis and President Trump involved. “I entrust little Charlie to the Father and pray for his parents and all those who loved him”, the Pope said in a tweet as a tribute to Charlie.
Charlie had a rare genetic disease and was in Great Ormond Street Hospital in the United Kingdom from last year October when his symptoms escalated. Later, the hospital decided it’s in Charlie’s best interest to be taken off the ventilator and receive palliative care. Because they could not settle with the parents, it became a court issue in which the mother bravely acknowledged, “we would not fight for the quality of life he has now”.
Charlie’s parents heard of an experimental therapy in the United States that they thought could give their son a chance at life. However, the specialists team in the UK argued against it; saying the treatment would be futile given Charlie’s current status and might not undo the brain damage that he already had. The court ruled to the hospital’s favour. This drew different opinions across the world. Despite the emotional burden, the parents kept everyone updated through their GoFundMe fundraising page, social media pages and media briefings.
In Charlie’s case, the doctors were aware that the genetic mutation causing the illness was on the gene RRM2B. Some patients however do not have a diagnosis and end up undergoing a battery of futile medical tests, following one dead end symptom after another. Next generation sequencing has made it easier to pinpoint genetic disorders with the aid of geneticists. By sharing their stories widely, parents of such children have enabled other patients to get a quicker diagnosis, treatment and even provided support systems. Organisations like Global Genes created by such parents, have enhanced awareness around rare diseases and such patients are connected to resources that improve the quality of their life.
Doctors have been said to use the social app Snapchat to seek the opinion of other doctors for rapid diagnosis. Some may argue this to be a data protection risk but the overall benefits and convenience cannot be ignored either.
Closer home, shared social media posts with Mpesa paybill numbers and bank details have enabled Kenyans to fund treatment for complete strangers and clear their hospital bills. In a country, still trying to fix its health care system, such initiatives have saved several lives.
In as much as fake news is a negative spin off of the current viral tendencies of the internet, medical science has gained a lot more from it.
Share early, share often.
Photo credit: Scope Vision