The story of Gage
My son, Gage, was born on July 10th, 2008. Gage has been diagnosed with a rare genetic disorder called Carnitine-acylcarnitine translocase deficiency (CACT), which prevents the body from converting fats to energy. There are only a handful of known affected individuals currently alive, as the overall mortality rate is greater than 73% and most die by age three. There have only been 30 documented cases in the world.
Gage is not able to fast for more than 3 hours or he could progress into a metabolic crisis consisting of seizures, lethargy, coma, and death. A metabolic crisis is often triggered by things like illness or infection, going without food for a long time, prolonged heat exposure, and heavy exercise.
Gage was 5 months when he began participating in a research study using Triheptanoin (C7) oil. I believe the oil has greatly improved and prolonged his life. We travel to Chicago every 6 months for the study and will do so until it’s FDA approved.
Gage is now 7-years-old and currently in 1st grade. He is non-verbal, developmentally delayed, wheelchair bound, has nephrocalcinosis, cardiomyopathy, at risk for seizures, GJ tube fed (diet consists of numerous components), on a bip-pap with oxygen at night and requires daily medications. He’s had frequent hospitalizations throughout the years and I came close to losing him many times. Despite what he has been through, Gage is a happy, sweet, easy going little boy that can put a smile on everyone’s face that meets him:-)