This is Gavin Marquez, a bit over three years ago. As a baby and a young toddler, Gavin appeared to progress normally, if slowly. But around the age of three, he began to lose his coordination and had trouble eating. Today, Gavin is unable to walk or sit up on his own. He can't swallow, so he has to use a feeding tube to eat. He has never spoken a word.
Gavin has Tay-Sachs disease.
Tay-Sachs is a rare genetic disease that disrupts fat metabolism in nerve cells, leading to progressive degeneration of the central nervous system. There is currently no cure or treatment; it is always fatal. Most children with the juvenile form of Tay-Sachs disease die between the ages of five and fifteen. Gavin turned six in November.
I first learned about Gavin from my wife, who works with Gavin's mother. Being a parent myself, I can't imagine anything worse than watching my children suffer, and thinking about the Marquez family and what they go through on a daily basis just breaks my heart. I've been thinking for a while that I'd like to do something to help spread awareness about Tay-Sachs disease, as well as to raise money for the family and toward research for a cure. Which is why I'd like to ask you to join me on Saturday, February 25th in Old Poway Park for the Hope for Gavin Mini-Session Event.
Just like with my previous mini-session events, you will receive a 20-minute family photo session and an online gallery of 15 hand-edited images. Unlike before, though, you will also receive 3 high-resolution digital files that you can select from your gallery, plus a written print release so that you can use and share your pictures as you like. Each session is $300, and I will be donating 100% of the proceeds to the Marquez family and the Cure Tay-Sachs Foundation.
Space will be limited, so be sure to make your reservation as soon as possible. I hope to see you there! But if you're not able to join me for a mini-session, please consider donating directly to Hope for Gavin, the Cure Tay-Sachs Foundation, or the National Tay-Sachs and Allied Diseases Association.