Abigail with her little sister, Sadie, her mother, Jen, and Mimi.
“WE ARE INFORMING THE WORLD ABOUT THIS TERRIBLE DISEASE DAILY, HOPING THAT TIME DOESN’T RUN OUT AND FIGHTING TO SAVE ALL KIDS AFFECTED BY THIS TERRIBLE DISEASE.”
– The Means Family
ABIGAIL MEANSCurrent Age: 9 Home State: Kentucky Diagnosis Date: January 13, 2015 Sanfilippo Type: MPS IIIA Parents: Mike and Jen Sibling: Sadie
What it felt like when we learned our child has Sanfilippo Syndrome…
It was our worst nightmare come true.
How has Sanfilippo affected our child?
We miss who Abigail was as this disease slowly changes her, but we love exactly who she is today!
How has Sanfilippo affected our entire family?
Our family has learned to cherish all things, big and small. We celebrate life together daily as time is against us.
The hardest part of being a Sanfilippo parent is …
All the milestones that Abigail may never meet is hard. We watch Abigail slowly slip away while all her friends grow into the young children we may never see her to be.
The biggest misconception people have about being a Sanfilippo parent is …
People think I need pity, but in reality I need your understanding and love.
If we could tell people just one thing about Sanfilippo Syndrome, it would be …
Never judge a book by its cover. Love each person’s “normal.”
Why are we asking you to donate to Cure Sanfilippo Foundation?
There are so many steps being made each day towards treatments and the cure. Don’t let funding be the reason time runs out for so many children.
Our Latest News
Abigail is joyful, always. Her laughter fills any room with happiness. While her words are limited, she speaks volumes to us with her beautiful eyes and smile. We continue to hope, inform and fight for Abigail’s life as well as all the other children affected by this terrible disease.