This past Saturday, May 5, we attended the Hawkins' fundraiser at W.R. Odell Elementary School in Concord, N.C. Congratulations to the Hawkins on a job well done! Even though the weather was gloomy, they had a good turnout. On behalf of the Hawkins family and all of us living with Batten Disease, thank you to those who teamed up with Chris and Wendy by giving something of themselves to make the event a reality. 

Saturday morning marked the first time anyone in our family had the opportunity to meet another child with Batten Disease. There are at least five such children in North Carolina, including Taylor, and on Saturday, we met three of them. Brandon and Jeremy Hawkins were there. While it's obvious that Brandon, like Taylor, has a severe visual impairment, five-year-old Jeremy is full of energy and personality--and seems absolutely normal. From looking at him, you wouldn't know that he has a cruel, hateful disease, just as his older brother does. I think I've said before that you can't measure tragedies like Batten Disease in children, but seeing them broke my heart and even here, nearly ten months after T's diagnosis, made our awful reality even more real.

Meeting the Hawkins boys was memorable in many ways, but nothing was more heartbreaking--or inspiring--than the time I spent with Seth. Seth is eleven years old and suffers from Juvenile NCL. The disease has already had a great effect on him. Seeing Seth anywhere, in any context, would have made me sad, but it was infinitely worse knowing that barring a miracle, he is Taylor's future. 

Our prayers are with Seth, Brandon, Jeremy and Eric--the four children in the state of North Carolina who, like T, are known to have Batten Disease. They are truly angels. I felt that as I watched Jeremy dance the cha cha slide and as I listened to Brandon work the crowd every time his dad gave him the microphone. I felt it when Seth took my hand and didn't let go.