I remember it so clearly, it could have been yesterday. Tatyanna was sitting on her bed, toys set up on the table in front of her. She looked so tiny and out of place in the hospital room surrounding her. She was 3/4 of the way through her first course of treatment at Tiantan and was showing remarkable improvment. Suddenly it occured to Trent and I that she was talking while she played. It had been months since we had seen her do that. Until that moment, her play had been silent, her brow furrowed. Failing eyesight, frequent seizures and ataxia took so much concentration that even something as simple as play required concentration. We stood there and watched, not daring to move or say anything that would break the moment. I don't remember how long it lasted but I will never forget the feeling that we had been given a priceless gift- to go back and consciously make memories. They say you don't know what you have until it's gone and until I had Tatyanna, I'm not sure that I truly understood that statement.
***On February 28, which was also very fittingly Tatyanna's birthday and also Rare Disease Awareness Day, Noah Coughlin kicked off his run across the US to raise money and awareness for Batten Disease. Inspired by 2 girls that he grew up with who had the juvenille form of the disease, Noah plans to run an average of 20 miles per day as he treks from San Diego to Jacksonville. His journey can be followed on his website www.battenjourney.com or on facebook. If you happen to live anywhere on his route, please feel free to go out and show your support! I am truly inspired by Noah's determination and willingness to help fight for a cure. Because of Noah and the many people out there who are working so hard, there will come a time when no family will ever have to fight the monster that is Battens.