Lance was born five weeks early on March 9, 2000 weighing 6 lbs 2 oz. At first, he seemed like a normal baby but at 2 months of age we noticed he was not tracking with his eyes or doing the things his cousin, who was the same age, was doing. We also started noticing twitching of his eyes. My first thoughts were that he was blind. I kept taking him to his pediatrician who kept telling me he was fine and just a little behind from being born premature. Finally, I found someone to listen to me and that is when it all began.
For the next month, Lance had test after test which all came back normal. During this time, he was having seizures and was generally just a lethargic baby. Finally, a geneticist saw him and noticed his hair, which had Menkes characteristics, and thought Lance had Menkes. On June 17, 2000 we were told he had Menkes syndrome and would not live through that summer. Not only did he live through that summer, he lived 6 more years.
The six years were spent dealing with seizures, feeding tubes, urinary tract infections, oxygen, hospital stays but they were the best six years of my life. Lance could not talk but he always made sure I heard him loud and clear. He was a very happy child who loved us and his little sister.
Lance passed away on December 28, 2006 in my arms. He died a very peaceful death and that is all we ever hoped for. We miss Lance terribly and I talk about him everyday. My purpose in life now is to tell his story and raise awareness so that no mother ever has to spend a month not knowing what is wrong with their child.
Lance was truly an angel here on earth.
Lance's Mommy Tina
Posted: September, 2007