Ever heard of AV9?
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”
Five years into Sanfilippo, the reality of “no treatment or no cure” has become a safe place for us. We aren’t scared of this world anymore.
We gathered our worldly dreams for Jayden and Brooklyn and mentally buried them 6ft. under.
Continue reading “buried dreams”
We never put all our eggs in one basket. We learned that in the beginning of our diagnosis when everyone said “this option, that option” would lead to treatment or a cure. So far, nothing has come.
We also never get our hopes up. At least our hope in earthly things. We believe Jesus Christ alone is our hope and if He wants to cure our children, He will in His time, in His way. We are called only to trust Him.
Continue reading “A cure for Sanfilippo!?”