Grayson was an easy and laid back early on. (Easiest all-natural delivery ever!) In a family of hikers, he never fussed when being worn by his mama on the trail, and would squeal with delight whenever there was a breeze. Around the age of six months we noticed he wasn’t progressing quite as he should. Along the route to determining his diagnosis, he had countless blood draws, testing, observations, therapies, and a multitude of opinions as to the cause.
In June 2015, just three months after his first birthday, we received the news no parents should ever have to hear - Grayson has the terminal illness of Infantile Tay-Sachs.
Grayson turned three in March of 2017, and we are completely aware that “the end” is slowly creeping up on us every day. We’ve had to carefully craft what we tell our six year-old, who is great at educating others about Tay-Sachs, but doesn’t yet know that it’s a terminal disease. We’ve become the experts on Tay-Sachs as it affects Grayson, informing the doctors of what we need. Just as important, we continue to be as much of the “Kemp family” we’ve always known ourselves to be, which includes hiking as a family and sharing those hikes on our blog, Family Trail Time.
We are indebted to NTSAD for all of the support we've received since Grayson's diagnosis. NTSAD put another affected mother in touch with Grayson's mom to talk through things, provides helpful literature, hosts an annual conference for affected families to come together, and fund raises for research to find a cure. For NTSAD's 2017 Day of Hope on September 16th, we are having a live raffle in Grayson's hometown of Elk Grove, California.Thank you to the following for such generous donations to our raffle:
Raffle tickets are $5 each - or - 5 for $20 and can be purchased online.
Winners will be announced live on Facebook page Team Grayson Kemp at 8:00am PST. Each winner is responsible for coordination of prize pick-up from Elk Grove.