I am about to get pretty personal...
As some of you may know, in 2007 I lost my little brother Alexander to Morquio Syndrome (http://children.webmd.com/morquio-syndrome). Morquio is a rare form of dwarfism that has various side effects other than inhibiting growth. Today is Alex's birthday, so I wanted to share his story.
Alex was born in Honduras, in a rural village in the mountains. My parents, immigrants themselves, always said that if they had the opportunity to help someone raise up out of poverty, they would. That's why, in 1982 they traveled back to my mother's native country to adopt a child. My parents visited an orphanage and when they saw Alex, my father felt as though Alex had looked into his soul. They brought him home to New York the following week.
Alex lived for 25 years filled with triumph and tragedy. At 2, he was diagnosed with Morquio. What followed was a long search for treatments and surgeries that would slow down the degenerative process. It was terrible. Alex endured nearly a dozen invasive operations before the age of 10. Through it all he never complained, and was always quick to smile. Alex was an inspiration to all who met him.
When Alex passed away, life seemed to be a dream for a long time. None of us saw his illness turning from bad to worse so quick. The whole family was taken by surprise. It has been a long road to healing, searching for the meaning of this journey we call life. As I started to come out of the other side of grief, I realized I wanted to do something beautiful in my life.
Alex's time here was short, but his bravery has had such an impact on me. I find strength in his example. I find courage in his fearlessness. And so I have decided to tackle giants of my own. That giant being my dreams, and paving a way to share my creative ideas with the world. I vow to be strong in the face of adversity, to be inquisitive, to listen and to ask questions. I vow to never stop believing, and to always continue living the life that I want to live. Thank you Alex, you are and always will be my heart.
Please check out the beautiful art being created and shared by the Dwarf Artist Coalition. (https://www.facebook.com/LpaDwarfArtistCoalition). I love the exhibit Ecotopia, being curated by DAC chair Amanda Cachia. I wish I could go to Canada to see it in person! I will have to settle for this video: http://www.saag.ca/art/exhibitions/0667-ecotopia.
Please also check out the website for the Little People of America organization.http://www.lpaonline.org. Our family attended many of the LPA conventions, and found much solace in the shared experience of the familys we met.
Remember, life is a gift.