OK! I know it’s been a while but I am going to try and make it a point to post at least once a month and give you all updates! If I slack make sure to remind me 🙂
So, first things first! The enzyme replacement therapy for Morquio Syndrome A has been approved by the FDA!! This is not a cure but a treatment that will help reduce some of the symptoms of Morquio Syndrome like heart issues and respiratory issues. It is a weekly infusion of a synthetic version of the enzyme that the boys are missing. They will receive it once a week via IV and it is an all day event. We are in the process of getting Jack and Hunter to be able to get this but are having a hard time with our current hospital. Their pediatric infusion room is full of children who have cancer and are getting their treatments. Very sad all the way around. But we are not giving up! We are going to keep fighting to get it there and if all else fails we can start trying in Boston (which others are already getting it there – but we do not really want to make the trek to Boston every week).
The other up date is the 4th Annual Tour for the Twins is ready to go! Click on the link below to bring up the flyer!
Other than that everything has been good! They only have a few more days of school left. In July they will go to school three days a week for extended school year, so they don’t regression on things they learned in Kindergarten. Then they will be first graders!
Like I said I will try to come on here at least once a month to give you any updates and share what we have been doing. Here is a picture of them this past fall. We were getting our pictures done and of course they had to pet the little dog they saw 🙂
As I finish this post I realize that it has been four years this month that we heard the news that Jack and Hunter had Morquio Syndrome. We all have grown so much in the last four years and it is amazing how something like this can change your whole out look on life…