A Sanfilippo Story by Grammy L…
This story is more than Oliver! It includes his whole family… Jen, Brian, and Reagan… Great-Grandparents, Grandparents, Aunts, Uncles, Cousins, Friends, Neighbors, Employers, the Cure Sanfilippo Foundation, Extended Family, Casual Acquaintances, and all of our children under its umbrella… And you! Thank you for becoming aware of this rare genetic disorder that steals the future from Oliver and his friends. And for letting me share with you precious, joyful, and candid moments in Oliver’s life.
This is my sweet love-love boy and his family today:
You see a happy family. And, oh they are! Lots of love, laughter, and living in the moment!
But behind the scenes, what you don’t see are the sleepless nights, the increasing hyperactivity, and angry outbursts that Oliver cannot control. You don’t hear his speech becoming harder to understand. You don’t witness him falling behind developmentally.
It’s hard to imagine that Oliver’s sunshine will fade away before he has a chance to grow up.
But for every Oliver there are so many more children affected by this rare genetic and metabolic neurodegenerative disorder. Right now there are 87 more of his friends on the Cure Sanfilippo Foundation website alone. And this is only one website, albeit a powerful one!
Glenn and Cara O’Neill created the Cure Sanfilippo Foundation in 2013 within 2 months after their daughter, Eliza, was diagnosed with Sanfilippo Syndrome, at the age of 3. Glenn left his position in the corporate world and Cara gave up her practice as a pediatrician.
Cure Sanfilippo Foundation does more than raising funds for research and the development of treatments leading ultimately to a cure. The Foundation is a support community for Oliver and his friends.
As co-founders, Glenn overseas the Foundation as a business and a parent. He is the voice of support, love, understanding, and information when contacting him with the gut-wrenching diagnosis of your child with Sanfilippo Syndrome. He embraces you and then goes into super-warrior mode. He’s got your back and never ever lets you forget this. He walks with you every step of the way. You are not alone ever. He cares and unites you with the other families.
Cara runs the scientific side of the Foundation by overseeing research grants, developing relationships with biopharma, and creating the improvement of clinical management guidelines to better inform physicians and drug development companies of patient and family needs.
Since its inception, Cure Sanfilippo Foundation has raised over $5.2 million dollars and funded over 14 research programs around the world.
Check out Cure Sanfilippo Foundation to find out all about Oliver’s friends and learn more about this life-limiting diagnosis.