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My Austin

Today. Tuesday, May 15. National MPS Awareness Day. National Mucopolysaccharidoses Awareness Day.

MPS can fall into 8 different categories with many different specifications in each category. There is about a 1 in 100,000 chance that a child would be born with MPS and some types are much rarer than others. Children with MPS usually have normal growth and development until about ages 2-6. Around then, visible learning declines and physical delays in development are noticeable. Most children live into their teenage years, but some pass away at an earlier age.  

But to me, none of those facts or statistics matter. To me, Austin, my Austin, is the most incredible person I’ve known.

Austin is my cousin who is 15 years old. He has MPS. I am only one year older than him, and when we were younger, I claimed the position of being his personal caretaker whenever I was with him.

I knew that he had something that made him special because I had always been told that, but I didn’t understand. I was too young to understand something without being able to see it. And I couldn’t. He didn’t look different to me. Now anyone who sees him can see. But I don’t think they can understand.

When I see my Austin, I see the sweetest face and the biggest brown eyes. I remember helping him pick up Cheerios and moving the straw in his cup so he could drink. But he can’t eat food anymore.

I remember repeating my name in the slow, sound-it-out tone that you would use when you’re trying to make a baby say a new word. I said it over and over until he repeated it back to me, but I was the one with the big smile on my face when he said it out loud. To me, it meant I was special to him. But he can’t say my name anymore.

When they see Austin, their Austin, their brother and their son, they remember a lifetime of memories that happened in 15 years and they see the memories that are unfolding in front of them. Memories of helping him hold a basketball or watching Toy Story together. But he can’t hold a basketball anymore.

All of those things sound sad, but that’s because people can’t understand.

There is only one way someone can understand Austin, our Austin, the brother, the son, the cousin, the nephew, the grandson, the friend. The only way anyone can understand him is after they hear one thing: his laugh. The opened mouth, widespread smile, room-filling laugh. When you hear his laugh, it is unforgettable.

Children with MPS can be labeled and grouped together by so many things, but his laugh could never be repeated. When you can understand and hear his laugh, your life can’t go on being the same. It’s a feeling that can’t be described. Hearing it once is like joining a club, a club full of so many people his life touched by his laugh.

Today, National MPS Day, isn’t just about bringing awareness to a genetic disease, it’s about bringing awareness to all the children and families touched by that disease. It’s about bringing attention to a boy like Austin, a boy who is 15 and has touched more lives than many people will meet by the time they’re 15.  It’s about his family that has brought more happiness, faith, and love to everyone in their lives no matter how hard their life has been.

MPS Awareness Day is about the children and families behind the label, not the facts or statistics. Because anyone who knows Austin, my Austin, knows he is not the facts or statistics and that is why he has touched so many people. That is why he is so special, to me.

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