Jackson Jinright Case History

JacksonJinright

Our son, Jackson was born on March 3, 2007; he had a normal birth other than some minor fluid in his lungs.  He spent five days in the neonatal intensive care unit before being sent home with a clean bill of health. Only two months after being home we started to have uncertainty about Jackson’s health. In June of 2007, Jackson spent weeks of testing at Children’s Healthcare of Atlanta.  It wasn’t until August that we would receive his diagnosis.  Jackson was diagnosed with a peroxisome biogenesis disorder, which falls in the Zellweger Spectrum. These are inherited conditions that damage the white matter of the brain and also affect how the body metabolizes particular substances in the blood and organ tissues. They are caused by defects in any one of 12 genes, that are required for the normal formation and function of peroxisomes (cell structures that break down toxic substances in the liver, kidneys, eyes, and brain, and synthesize fatty materials that are necessary for cell function). Peroxisomes are required for normal brain development and the function and formation of myelin, the whitish material that coats nerve fibers. Jackson has been fighting ever since.      Jackson’s progress was initially made possible by Dr. Martinez in Barcelona, Spain. We first went to her clinic when Jackson was only seven months old.  He was so weak and had such hypotonia, that he could barely lift his head.  He can now support his head, and tries to sit (with support) for short periods of time.  Jackson’s weeks are filled with therapies, but he loves school, his teachers and his classmates.  He has a cochlear implant for hearing, he has lost most of his vision, his feeding is performed via g-tube, and he requires a wheelchair for mobility.  Yet, not a day goes by that Jackson does not smile, or laugh, or fill our lives with joy.

In the fall of 2010, Dr. Martinez lost her battle with cancer and we were forced to find new doctors to help our son.  We have been extremely blessed to find a few dedicated Doctors at Kennedy Krieger, Johns Hopkins University, and McGill University, which have been researching his disease in hopes of one day finding a treatment and ultimately a cure.  Due to the rareness of this disease, funding for research is minimal.  With the help of family, friends, and community involvement, supporters of these children provide much needed aid to their cause.  We thank the Bizen Company and Select Supplements for your help and support of our children.