JOIN USFaith changes fate
We take so much for granted that we do not, sometimes, appreciate the simple things in our lives that bring us pleasure. However, a reading of The Cure, the true story of a father's race against time to save his children from the clutches of death, can change all this and more. It makes us feel grateful for being able to walk, talk and lead normal lives. It encourages us to live for the moment. For, that's what real life heroes like the Crowleys are doing and it's a lesson they learnt the hard way.
When John Crowley graduates from the Harvard Business School with flying colours, he has dreams in his eyes and a fire in his belly to conquer the world to make life as comfortable as possible for his loving wife Aileen and his three lovely children. But, destiny has other plans for him. Both Megan, his beautiful 15-month-old daughter, and Patrick, his five-month-old son, are diagnosed with Pompe disease, a rare genetic disorder that leads to the gradual degeneration of muscle, making the children unable to walk, eat, or even breathe on their own.
His world comes crashing down when the doctor tells him that both his children may not survive beyond their fifth birthday. To make matters worse, he learns that there is no cure or treatment for the disease and, as it is rare, no company wants to spend the money needed to sponsor research.
Certainly not the one to take things lying down, John starts a family foundation to fund research on Pompe disease. His old boys' network and his ability to think on his feet come to his rescue in raising millions for the foundation. The only dream he now nurses is to find scientists who can develop a replacement enzyme that can arrest the spread of Pompe and keep his children alive. He funds three different scientists for the project in the hope of reaping positive results and including his children in the clinical trials, but in vain. His anxiety to buy time for his children grows by the minute, forcing him to quit his well-paying job as a financial consultant and found Novazyme, a biotechnology company, with the sole objective of finding a cure for Pompe. As the young CEO of the company, he struggles hard to push science to the limit, urging scientists to speed up their research. He knocks on several venture capitalists' doors, only to be rejected for his inexperience in the field. However, the fighter in him doesn't allow him to give up his struggle.
Even as John fights it out in the corporate world dealing with scientific setbacks and a fund crunch, life at home for Aileen and the kids proves to be a relentless struggle. With the oldest, John Jr., having problems in school because of his attention deficit syndrome, and the two younger children in wheelchairs with ventilators, life is no party for Aileen. Inefficient nurses and frequent visits to the hospital only add to her woes. While John feels Aileen is not doing enough for the kids, Aileen feels John is unappreciative of her role as a nurse 24/7. Such unrealistic expectations and the incessant struggle to keep their children alive take a heavy toll on their marriage. Fortunately for them, good sense prevails and they realise that they need each other to lean on. With renewed vigour, John forges ahead with his plans to take his company forward and sells it to Genzyme for a whopping $137.5 million.
At Genzyme, as its senior vice-president, John continues to push hard for Pompe research and for the inclusion of his two children in clinical trials of new treatments. For, time is ticking away and his children are growing weaker by the day. To add to his frustration, the company decides to start clinical trials, but on children below one, and he is accused of bending company rules to include his children in such trials. The issue of conflict of interest fast devouring his hope of getting his children treated, John has no option but to resign from Genzyme to get his children the 'Special Medicine' he had promised them.
With his resignation comes the 'Special Medicine' for his little ones. Today, Megan is 13 and Patrick is 12. Their parents' persistent efforts to keep them alive have seen them survive beyond their fifth birthday. They are much stronger, attend school (with a nurse, wheelchair and ventilator) and live as a happy family. John and Aileen are, however, unsure of the life span of their darling children and hence live for the moment, celebrating every occasion with gusto.
This poignant, rich, real and inspiring account of Crowleys' lives is heart-wrenching. Nevertheless, the message of hope it carries is overwhelming. Geeta Anand's deft prose and captivating narrative make this story of triumph over insurmountable odds intensely moving. The ease with which she relates the story of a marriage and family that survived despite incredible odds speaks for her deep understanding of Crowleys' personal courage. This Pulitzer Prize-winning journalist's chronicle of a father's extraordinary efforts to buy his sick children time has even been made into a movie titled 'Extraordinary Measures', starring Harrison Ford and Brendan Fraser.
Faith can move mountains, they say. This maxim is definitely true for John Crowley, who pressed ahead to find a cure for his children with intense faith in himself and his mission. A 'must-read' for those of us who take life's blessings for granted.