Get to know the Lagarde family – Sam, Brittany, Sawyer, and Zion!
Find out what the past year has been like in their lives with this week’s Family Friday.
Get a glimpse into living with Sanfilippo Syndrome through the Lagardes’ honest and insightful perspective.
The Lagardes live in Minnesota. Sawyer turned 7 in January and was diagnosed with Sanfilippo in June 2016.
What has been going on in your family and for your child in the past year? What have been hard parts? What have been bright spots?
Sawyer transitioned out of an ABA center to a full-time 1st grade. She loves school! 2020 was hard for all of us, but mostly for Sawyer. She had COVID and recovered. But the school shutdowns really triggered some regression. Since being back in full-time school for a few months now, she’s been thriving and the growth has been night and day.
What is your child like today, compared to when they were diagnosed?
Sawyer lost all of her speech about a year and a half ago. She used to be so silly and outgoing and have this vibrant spirit. Now, she’s more reserved and timid. She’s still so happy and smiles often.
What is one thing people would be surprised to know about living with Sanfilippo?
You don’t just grieve when your child first gets diagnosed with Sanfilippo. It’s a constant grief because it’s a degenerate disease. You’re constantly grieving the loss of a skill, or a memory, or something you can’t do with your child because of Sanfilippo.
Follow the Lagardes to keep up with their journey