Robin from Pennsylvania

I'm a hard working woman who loves helping people. In 2001 I adopted my nephew James when his mother was killed in an accident he was 5 and terminally ill with Mitochondrial Disease called Leigh's Disease. Caring for James was a 24/7 job. He was completely dependent for all his care. He lived his who life in the body of a child and the mental state of a baby. He was fed through a tube in his stomach, he was on a monitor because he would stop breathing, he had seizures all day. I was very thankful for the time we had nurses come in. The best part of my experience was loving James, and his showing me that my life could be so much better because of him. The most challenging I would have to say is the day that we as a family had to make the decision to let him pass. He had gone into renal failure and the doctors said there was no reversing the failure. That he was only going to get worse, that as long as we continued giving him his tube feedings and oxygen he would go on living and getting worse. With out any quality of life. I laid beside him holding him, as I said goodbye that we would be fine if it was time for him to leave us. The most heart wrenching experience in my life. James passed away August 21, 2010 at the age of 14 years 8 months. Advice I would give to other families would be love deeply, always let them know how much they mean to you. If they feel like they are a bother, remind them how living your life without them would never be the same.