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.

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#tbt post 2: Sweet Voices

Jayden and Brooklyn spend a ton of time at doctors offices.  Days of being weighed, touched, poked, and tested.  In fact, we just got back from participating in the Natural History Study of Sanfilippo being completed in Columbus, Ohio.  We started in July and this was our six month check up.  I am sure you all want the details because the doctors there are working on gene therapy-a potential cure/treatment for children with Sanfilippo.

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updates regarding gene therapy, please read and share

Thank you, friends!
The response to my blog post and Eliza’s video, is amazing! Not only has the video gone viral, it is causing other media attention. Because of your sharing on Facebook, my last blog has over 3,000 views!

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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!”