Farewell S.D.
Posted: Thu Aug 14, 2008 6:22 pm
Today at around 1PM my time, my cousin S.D. has passed away. He has reached the age of 26.
He was carrier of the M.E.L.A.S. syndrome, which stands for Mitochondrial myopathy, encephalopathy, lactic acidosis, and stroke (MELAS), and in fact it is a progressive neurodegenerative disorder.
It causes all sorts of physical malfunctions, like epileptic attacks, instant coma's, progressive loss of sight and hearing, incontinence, and a whole lot more. In the end the longs, heart, kidneys, and other crucial parts of the body simply stop working. Only about 12 people in the whole of Europe have this disease. It is not common enough for doctors to develop a treatment. Once the prognosis has been made, it's a matter of counting the remaining days. He was prognosed at the age of 12. Doctors never gave him more than 3 more years to live, but somehow he made it to the age of 26.
He never had the benefits and luxury of most of us. His disease prevented him from driving a car, going out with his friends, having a girlfriend etc. Actually all of the things we take for granted. At times like these one wonders what the hell we are complaining about at times. We really should be grateful for what we have in life and that we actually get a chance to enjoy life. Others, like my cousin, have been alive, though never got the chance to enjoy any of it.
What I can't understand is 'why'. Why did this had to happen to him? This kid was nothing but good. Never hurt a fly. Now I know there is no point in asking this question. But it sure as hell makes you wonder.
Ironic detail is that his sister, my cousin, was getting married tomorrow. Go figure. The marriage has been canceled for now.
I am writing this on the community forum in memory of my cousin. A boy who never got a chance to make something out of life. Who was plagued by disease, disappointments and relapses. Time and time again. For 14 years at a time.
My thoughts go out to his parents and brother and sister, who have had a really rough time the last 14 years. Be strong folks.
This breaks my heart. It's not fair.
He was carrier of the M.E.L.A.S. syndrome, which stands for Mitochondrial myopathy, encephalopathy, lactic acidosis, and stroke (MELAS), and in fact it is a progressive neurodegenerative disorder.
It causes all sorts of physical malfunctions, like epileptic attacks, instant coma's, progressive loss of sight and hearing, incontinence, and a whole lot more. In the end the longs, heart, kidneys, and other crucial parts of the body simply stop working. Only about 12 people in the whole of Europe have this disease. It is not common enough for doctors to develop a treatment. Once the prognosis has been made, it's a matter of counting the remaining days. He was prognosed at the age of 12. Doctors never gave him more than 3 more years to live, but somehow he made it to the age of 26.
He never had the benefits and luxury of most of us. His disease prevented him from driving a car, going out with his friends, having a girlfriend etc. Actually all of the things we take for granted. At times like these one wonders what the hell we are complaining about at times. We really should be grateful for what we have in life and that we actually get a chance to enjoy life. Others, like my cousin, have been alive, though never got the chance to enjoy any of it.
What I can't understand is 'why'. Why did this had to happen to him? This kid was nothing but good. Never hurt a fly. Now I know there is no point in asking this question. But it sure as hell makes you wonder.
Ironic detail is that his sister, my cousin, was getting married tomorrow. Go figure. The marriage has been canceled for now.
I am writing this on the community forum in memory of my cousin. A boy who never got a chance to make something out of life. Who was plagued by disease, disappointments and relapses. Time and time again. For 14 years at a time.
My thoughts go out to his parents and brother and sister, who have had a really rough time the last 14 years. Be strong folks.
This breaks my heart. It's not fair.