Ellie is turning 3! We are so happy to celebrate our sweet girl and all the joy she brings to our lives, but Ellie’s birthday is a bittersweet reminder of the harsh reality that comes with her terminal diagnosis of Sanfilippo Syndrome. Just about six months ago, we learned her devastating diagnosis.
Sanfilippo Syndrome is a degenerative neurological disease caused by her body’s inability to produce one single enzyme. Sadly, the consequence of this missing enzyme is catastrophic. Ellie’s body is unable to recycle natural cellular waste and each and every second her mind and body are being damaged. We are already seeing the signs of the disease in both her vision and hearing loss along with her speech delay and restless behavior. Ellie is still learning every day, but she has to work tirelessly for every single new word and skill that she acquires.
In honor of Ellie’s 3rd birthday on February 17th, we will be sharing our story with you. We ask that you help us in the fight to cure Sanfilippo Syndrome. Everyone can help. It is so difficult for us to ask for help but we know we can’t do this alone. Please consider making a donation in Ellie’s honor to Cure Sanfilippo Foundation. Your donation will be used to fund research for a cure. No amount is too small. We understand if you can’t donate, but please share our story; awareness is so important. Lastly, please continue praying for our family. It means more than you know that so many people are thinking of our little girl.
Our goal is to raise $10,003 from February 10th to February 17th. We want to celebrate any many birthdays as we can with Ellie by giving her the gift of LIFE!
Please continue to follow our journey.