We did it! First fusion was successful.
Josef is the youngest in Canada to ever be treated for CLN2 and one of the few in world to be receiving the enzyme replacement therapy at this very young age.
Such mixed feelings bringing in a healthy baby boy to the hospital, but knowing what this terrible disease takes away from children, especially seeing some of that in our own daughter, gives us that strength to push through.
We stay hopeful he won’t ever experience that.
And next week we will be right back with our little Claire bear and by the end of the month they will be on the same schedule. We are very much looking forward to having a routine in our hectic life.