Loving My Cousin Max: A Life Changing Experience

          I was eleven years old when my oldest cousin’s child was born.  I am the youngest out of the cousins on my mom’s side of the family, so I was so excited for there to be a new baby for me to play with and love.  My first cousin Ilyce named her son Maxwell Aaron and although she had a difficult delivery, he seemed to be perfectly healthy.  The only thing that was different about him was that his head was a little larger than normal, but this did not seem problematic to us.  As Max began to grow, he was not reaching any of the milestones that he should have been.  Max’s doctors told us not to worry, and that babies develop at different rates.  At a few months old, Max still was not holding up his head, or doing other things that he should have been doing, so he went in for further evaluation.  At five months old Max was diagnosed with Canavan disease.  No one in my family had ever heard of Canavan disease, and my cousin had never even been offered genetic testing for the disease when she was pregnant.  We were told to put Max in a child’s nursing home because he would turn into a vegetable and die probably not live past ten years old.  Our family was shocked and devastated that this could happen to us, but we decided to love Max with all of our hearts and fight for him.

          Almost immediately after the diagnosis, we researched the disease and did all we could to find out everything about it.  Canavan disease is a fatal recessive genetic neurological disorder that deteriorates the white matter in the brain.  This white matter is called myelin and it insulates nerve cells in the brain allowing messages to travel very fast.  Children with Canavan disease do not have the enzyme responsible for breaking down an acid in the brain called NAA and the NAA accumulates.  The excess of NAA in the brain hinders the normal formation of myelin.  Children born with Canavan disease are incapable of holding up their heads, sitting or even speaking, and may die in early childhood.  Since I was only twelve years old at the time of diagnosis, this was something that was very hard for me to deal with.  I made a decision from the very beginning that I would love Max and treat him just like any other child.  Even though I was young, my cousin having this disease is something that began to change me right away, and would continue to change me in the future years to come.

          Before Max was born, I was very close with his mother Ilyce, and would stay over at her house for a few days.  Once Max was born, I began to sleep over even more regularly, because I wanted him to really know me and enjoy being with me.  As Max grew a little older I started to really feel close with him.  I began to realize how close we were when I would come over and he would greet me with love and happiness.  Max has the greatest personality and has the biggest heart.  He is trapped in a body that will not do all of the things that so many people take for granted, but his social intelligence remains strong.  Max has a wonderful sense of humor, and whenever I am with him I always try to make him laugh.  Although he cannot talk, he speaks in his own way and has the best laughs I have ever heard.  Max has this one laugh that sounds almost like a scream.  This is my favorite laugh because it is the one that he does when he is really cracking up.  Max also has a big heart and shows a great deal of love.  He has to work so hard to move his arm all the way around me to give me a hug, but it means so much to me because I know how difficult it is for him to do this.  He also likes to give and receive kisses and be held, and I can see how content he is just being around people that he loves.         

Max is now nine years old, and the bond that we share is indescribable.  I have learned so much about life through being with Max.  Max is one of my own personal heroes and I find qualities in him that I strive to have as well.  Max is someone that has never gotten mad at me and has no hate or anger toward anyone.  He is a friendly little boy who is adored by everyone that knows him.  Max has dealt with surgeries, working hard in therapy, wearing a special sleeping cast at night, and many other things, and he takes everything in stride and does not complain.  Whenever I complain, I catch myself and think about all that Max has to go through.  He helps to keep me grounded and put things into perspective.  Max is also one of the major influences in my life that has made me want to work with children that have special needs.  Before Max, I had never been close to anyone with a special need, and because of him I have learned that there is so much more to people than what can be shown on the surface.  Someone looking at Max might think that he cannot do very much and just walk on by, but he or she would be missing out on getting to know such an amazing person.  Max has taught me that a book cannot be judged by its cover, and that the real person is what is deep inside.

When I am around Max, I feel as if it is a privilege to be with him.  Although he is sixty pounds now, I make sure to hold him every time I am with him.  I remember back when he was three or four that it would be weird holding him when he was an older boy, and I laugh at myself now for ever thinking that.  Sitting on the couch with Max and holding him in my arms is one of my favorite things to do in the entire world.  Max and I do not even have to be doing anything but being close to each other for both of us to be happy.  I do not know what the future will hold for Max, and sometimes it scares me and I still cry once in a while.  But what I do know is that Max has beaten so many expectations thus far, and that he has lived longer than the doctors predicted he would.  Not only has he survived this long, but he is doing well in school and is surrounded by people who love him and are there to fight for him.  Max’s mother believes in the saying, “when life gives you lemons, make lemonade,” and that is exactly what our family has done.  Max is the sweetest lemonade I could have ever imagined and he has impacted my life in so many positive ways and I am very grateful for our relationship with him.