BENEFITING: CURE SANFILIPPO FOUNDATION
EVENT DATE: Mar 05, 2016
We are pleased to announce that our “Keira’s Battle to Cure Sanfilippo: A Night of Hope” event will be held on Saturday, March 5th! An evening of food, music and silent auction at the University of Charleston Ballroom to CURE SANFILIPPO! We hope you will consider being a sponsor for this important evening. The theme of the evening is March Madness and we will have a donation battle between teams to Cure Sanfilippo. Wear your favorite team colors!
Get tickets by clicking register to the right or go directly to keirasbattle.eventbrite.com
Our family and Keira thank you from the bottom of our hearts. Remember to cherish all the precious moments with your family!
FOLLOW KEIRA'S PROGRESS
Imagine that your first child is struggling every day to do tasks that any other 5 year old doesn’t have to even think twice about. Imagine that she cannot tell you when she is sick, what she did at school or even what she just ate for lunch. Then imagine that after years of trying to find out why you finally get an answer. Unfortunately it is not one that you or any parent should have to grapple with.
Our Geneticist informed us that our wonderful daughter Keira had a rare and terminal genetic disease that we never even heard of called Sanfilippo just 2 months ago and less than 3 weeks before our second daughter, Keaton, was born. We also learned that she would quickly degrade and lose abilities right before our eyes, would likely die prior to or during her early teens, and that there were no treatment options. Additionally our second daughter had a 25% (1 in 4) chance of having the same condition. Words cannot describe how devastated we were by this news, or how surreal it is to talk to your physician about palliative care for a 5 year old. After the diagnosis, we took Keira out for Fro Yo, which is her favorite, and just tried to enjoy her enthusiastic consumption. It really is the little things that you enjoy and will miss the most.
After all that, now imagine that we live in a world where no child has to suffer from Sanfilippo or any other rare disease. This WILL be the world we live in one day and we are going to take the steps NOW to help realize it. We hope and pray that we will make a difference that can impact Keira’s life, but even if we fail to do that in time, we do not ever want another family or child to have to suffer. That is why we have partnered with the Cure Sanfilippo Foundation and will work every day to make Keira’s life better and eradicate this disease for all children. We know there are many worthy causes in the world. If Keira’s story touches your heart, then please consider sharing this story and helping to find a cure by donating today right here on CrowdRise or attending our Silent Auction and Dinner on March 5th at the University of Charleston Ballroom.
Cure Sanfilippo Foundation is a registered 501c3 non-profit (Tax ID: 46-4322131)
For more on this foundation and urgent cause to save children, please visit: www.CureSFF.org