My name is Stephany Lynch I have been a Smith Point Lifeguard for 3 years. Over the past year, I’ve had the privilege of working with two extraordinary children, Sam and Jake, who suffer from an extremely rare neurodegenerative disorder. When their mother Maria first approached me, I had never even heard of Cockayne syndrome. However, after looking over their web site raising awareness for CS (samandjake.org), I began to understand what great odds these two young people were against. Sam and Jake have exceeded their life expectancy by double. In fact, Sam is the oldest person living with CS Type ll at the young age of 13.
And not only are they still alive, they are living and enjoying their lives. The two have amazing personalities that will make you fall in love with them, just like I did. They are extremely intelligent, hilarious and so loving. They definitely do not let their disabilities get in the way of anything.
Now, the reason why these children have been able to fight for so long is because of their courageous mother who never stopped looking for answers. Maria wanted a long and happy life for her children and she found relief in stem cell treatment. The stem cell treatments have allowed Sam and Jake to continue breaking records and in doing so, they inspire so many to overcome the impossible.
Of course when living one day at a time, no one can tell what the future holds. But with continued stem cell treatment, things look bright for Sam and Jake. Which is why every year people from all over the country gather together to celebrate these two beautiful kids and help raise funds for their treatments. With your help, we can continue to support their long and happy lives and keep them smiling for many years to come.
If you can, please, stop by our fundraiser for Samantha and Jake on Saturday, October 3rd, 2015.