We got some awesome news today!
We have begun the process of getting Clark the newly appoved gene therapy, FAYUVI, for sanfilippo syndrome!
Upon approval, the drug manufacturer released the list of treatment centers where this treatment could be administered. The closest locations to us (we live in central Michigan) was Nationwide in Columbus and then the same hospital in Minneapolis where he currently gets his clinical trial drug.
Well today we found out that his geneticist and her team at UofM Mott Children's Hospital have been fighting for him behind the scenes.
The drug company has said YES for the treatment to be administered at Mott! 🥳
With the amount of traveling we have done over the last year and a half to Minnesota, it is a HUGE blessing that he will be able to receive this life saving treatment only an hour from home where we can have family present for such an emotional moment.
The Wolverines continue to show up for our little Buckeye in such profound ways ❤️
Take a look at how happy he was at our 2nd Cure Clark 5k this past weekend 🥰