Our beautiful girl is now 27. As far as we know she’s the oldest living patient with Lafora in the U.S. In January, she will turn 28, God willing. Though we’re not at all certain God IS willing – nor are we convinced that Kristen wants to either. Her little mind and body have been ravaged, and the spark of her spirit has been in hiding for several months now.

Another Lafora parent visited Seattle a couple of months ago. Her daughter is many years behind Kristen on this path. I watched her face as she beheld in Kristen what the future would hold for her daughter. The relentless progression, day by day, and month by month is almost imperceptible, but what this disease will do over several years time is stark.

The thing that keeps me going is the probability that the newly diagnosed children in our group will almost certainly be spared from having to walk this path, thanks to the efforts of Dr. Minassian and others who report that we are so very close to the cure. I⁏m praying that the research symposium to be held in San Diego in June, 2014 will be fruitful!

Provided by: Kim Rice