- Posted January 26, 2014 by
fountain valley, California
This iReport is part of an assignment:
Living with a rare disease?
rare mito disease tmemz70
My son Vincent have a rare mito disease tmemz70 which under 100 people had in which all died during neonatal. He is the sole survivor of this disease in which surpass till now at the age of 11 1/2 years old. He is a fighter since birth. He went into a coma after 2 days when he was born. Making a long story short, He weigh only 42 lb and is 47 inches tall. He is attending middle school now in which is the smallest person in the school. With every obstacle he faces with his health, he still maintain his ability to fight through it all. Of course, with such a rare disease there are currently no known cure. The disease is taking a toll on him with pancrease insufficiency and enlarging on the heart's wall. We want to share his story in hope of somehow there would be a cure for him. He is a surviving miracle. They did an mri scan when he was 15 month cause he did not walk and found out there was mylenation of the brain development affecting his ability to walk and talk. A month after he walked and at 3 years old began to talk. Although now at 11, his learning is still slow but he good at reading and he is doing multiplication by counting. He communicate well but not perfect but it is a milestone for him to be able to speak 2 languages english and vietnamese. He had his bad days but the good one overcome it all. At least he eats by himself and does almost everything on his own. They said during his teen years the disease might affect him more due to lack of sufficient growth like effecting his eyesight and hearing but so far it just effecting his heart enlarging of the wall and pancreas which is control by creon. It had been a tough journey for him but through it all still gives a big smile. We are still lucky with this disease that he does not require alot of assistance from others to do daily routine for living.