Before he was even born we knew he would have it. Adrenoleukodystrophy (ALD) is an X-linked chromosomal disease. ALD affects approximately 1 in 20,000 people. The statistics were so out of this world crazy that we thought he would be alright. We were wrong.

About three years ago Zachary started showing the symptoms. They started treating him with Lorenzo’s oil, even though it may not cure the disease. Last year he was sent to Minnesota to receive his transplant. He left in the middle of summer. He had to receive chemo and he was sick; a lot.

On September 26, 2012, Zachary received a bone marrow transplant. In the middle of December things started looking up so we decided to visit him for Christmas. He seemed alright. He was a bit overweight due to the steroids, and he was also very moody. One moment he could be fine and the next he would be angry, sad, or in pain.

I remember that one of his favorite things to do at the Ronald McDonald house was to play in the arcades or the gym. In the gym we would play basketball and football. He loved catching the football and having us “tackle” him. In the arcade there were some computers that had different games on them. One of his favorites was looking at two pictures and spotting five differences. He also liked playing foosball. We always let him win because it made him happy and if he lost he wouldn’t want to play anymore.

Eventually we had to leave. We promised him that we would see him soon but none of us were sure if this promise could be kept.

Zachary is so strong. When we should have been helping him through this catastrophe, he was helping us. He knew that there was a chance that the treatments wouldn’t work and that he could die, but he always looked on the bright side. I remember his mom posting a Facebook status that had about 300 likes and made a lot of people cry. It was about how Zachary told her that if he died it would be okay because he would be able to sit with Jesus and look over and protect her.

After a few months he got better and he got to come home! September 26 marks the one year anniversary of his successful transplant. Hopefully next year he will be even better!

Zachary taught me to never give up. If you smile through the tough times things will eventually get better. He taught me to stay strong. When everybody is expecting you to fall on them, show them that you are tough enough to do it alone. He also taught me to live life to its fullest. Any moment could be the last one and people need to learn that life truly can be shorter than expected. A little 5-yr old boy taught me so much more in this lifetime than I would have ever imagined. Without him I would not have learned these important life lessons. Zachary is my hero.