taking out the trash: a garbage lesson on Sanfilippo

Ever heard of AV9?
Me neither.
Until Ohio. Until gene therapy headed into the neighborhood of Sanfilippo.
Last Sunday, we packed the kids, the strollers, and the air mattresses. We shipped Ellie to grandma’s and headed off on our seven hour journey to Columbus, Ohio.  We settled into suite 319 at the Ronald McDonald house and thanked God for a good car ride.

Continue reading “taking out the trash: a garbage lesson on Sanfilippo”

A [potential] cure for Sanfilippo is here!

Dear friends and family-

 

It is with great joy and anticipation I write this! God has heard your prayers. 

 

There is a cure for Sanfilippo! Yes, you heard right! It is a miracle!  The very thing you have been praying for on our behalf is a reality. 

 

Continue reading “A [potential] cure for Sanfilippo is here!”