Rylee's friend Lucas was born with Sanfilippo... This year, our new years resolution it to help in the fight to cure this disease! Lucas is such a sweet boy. It's been hard seeing him progress with his horrible and mean disease over the years. If you could just donate $1, it would mean so much and also make a step closer to a cure!!
HUGS and happy 2010!!
(This is from Lucas's mom)
1 Million For the Cure
My New Year’s Resolution is to bring awareness to the devastating disorder that our son is suffering from. Along with this awareness, I hope to bring us one step closer to finding a treatment for the debilitating and devastating disorder called Sanfilippo Syndrome. Until we find a treatment, the disorder will continue to progress in our son. He will continue to lose his speech, his mobility, his ability to feed himself and eat on his own; we will lose his smile and laughter. The disorder will cause blindness, seizures and will eventually cause a vegetative state if he lives past his teenage years. There are many children suffering from this illness. Their families, like ours, watch their children deteriorate as they wait for a cure. Our hope could be close at hand. Please help us support Team Sanfilippo. This foundation is making great strides towards the treatment that we have been waiting for. We have no doubt that ultimately there will be a treatment to save these children. With your help, we can raise the necessary funding needed to support research. But we can only do this with your help!
I ask that you copy and paste this to your email. Please consider adding your signature to the bottom so that we know when we have reached our 1 million mark and CC your email to lewNstacey@yahoo.com. Email this to everyone in your contacts and ask them to do the same. If you can, please consider donating just $1. You can donate online http://teamsanfilippo.org in the company name section type 1 Million for the Cure. You can also send it to one of the addresses of the family members at the bottom of this page. If you are a family or friend of a child suffering from the disorder we urge that you add your address and collect donations and then forward them to the foundation. By the end of 2010 we will have hopefully reached 1 million people and find ourselves 1 millions steps closer to a cure!
1 Million for a Cure
Stacey and Lew Montgomery
Parents to Lucas Montgomery Sanfilippo Type B
3507 Remington St SW Cedar Rapids IA 52404 USA
http://www.caringbridge.org/visit/hopeforlucas
Wednesday, December 30, 2009