When I was seven,  my parents told me Kirby was handicapped and life was going to be a little bit different around our house.  As a naive and energetic seven-year-old, I responded, not to worry, Kirby will be different, but different can be kind of fun.  I watched as my parents’ eyes teared up, and I remember wondering why they could possibly be so sad.  This was going to be fun.

As I grew older, I watched Kirby’s body deteriorate and I slowly began to understand where my parents’ tears were coming from.  Kirby was my sister and my best friend.  It was hard to escape the thought that no doctor knows how to prevent this disease from attacking my sister.  So, our family made a commitment to Kirby and the rest of the children suffering from Sanfilippo that we would form a foundation to fund the research of a cure.  I knew that no matter what happened to Kirby, I wanted to know that I had done everything possible to try to save her.

Even at a young age, Kirby changed all of us.  When any of us were on the brink of tears, her positive attitude and determination empowered us.  Looking back, it really is incredible that the child who was dealing with the loss of her speech, mobility, and basic independence skills was the one keeping all of us positive.  Kirby united us and made us into a family capable of working together to raise $3.2 million toward the research of Sanfilippo.

For me personally, Kirby taught me how to live with the unexpected.  I have learned to work hard to change what I have control over and care for those I love.  I can control Kirby’s quality of life and I can work to make her as happy as possible, day by day.  I love taking Kirby on walks so she can see as much of the world as possible.  She has taught me so much, so it is the least I can do. Now, I ask one thing of you.   Keep reading, and share Kirby’s story.