Thirty years ago our seven year old son, Alex died from what was then an unknown illness. Despite his tissue samples being sent to several top laboratories overseas and being seen by many neurologists there was no firm diagnosis – possibly a virus of unknown neurological origin. As a mother I was shattered to find out there was no cure for Alex and yet men could walk on the moon. Where were peoples’ priorities?
Alex’s illness was always at the back of my mind. Six years ago we received a phone call that brought Alex’s death flooding back to haunt us. Our beautiful daughter, Rose (20) had been found convulsing and unconscious by her flat mates. We knew, although we hoped we were wrong, that she had the same illness as Alex.
After a phone call to one of Alex’s neurologists we were told that he had most likely died from a mitochondrial disorder. What? It was the first time we had heard the word, and when we googled it our hearts and hopes sank … an incurable illness for which there was yet no cure.
Meanwhile, Rose’s life hung in the balance as she spent several weeks on life support and in a coma. She recovered consciousness but spent months in rehab learning to walk again, regain her balance and many other physical activities we take for granted. A cocktail of anti-convulsants and supplements to enhance her body’s energy production became part of her daily diet – about 30 different pills in total.
Rose’s determination, for which she deserves a medal, and outstanding medical support, have given her part of her life back. Her greatest wish is to be normal, get through a day without convulsions, and be like her friends. It breaks our hearts to see her struggling and trying so hard but it’s also what motivates us to find a cure for Rose and every other sufferer.
Sadly, Rose passed away in June 2017.
8 August 2013