We are the parents of a little boy named Léo who passed away in April 2007. He was born in France in March 2001 and was diagnosed with Menkes in August later that same year.
That day destroyed many of our hopes and dreams, but also became the beginning to a new and completely different life.
We quickly diagnosed him with Menkes, because we were surrounded by a medical and psychological team, which has always supported us. Our life was organized around Léo, his comings and goings in hospital, and this terrible disease. We have lived through the disease, his cries of pain, his sleepless nights, and even his laughter made us emotional. We were overcome by a feeling of rage and helplessness every time we looked into his sad little eyes.
His illness caused seizures and respiratory problems. However, we always made sure he suffered as little as possible, always trying to keep him comfortable.
We always try to avoid being overcome by our grief, although we have collapsed in agony more than once. Every moment and memory we made with Léo will remain forever in our hearts.
We love him beyond what we ever thought was possible. Today we (two younger sisters and Mom & Dad) always think of him when we gaze up into the sky at the star "Etoile du Berger", that we renamed "Léo's star". We are comforted with the knowledge that he is always with us and protecting us.
Pascale and Alain
Posted: July, 2008