Important Cerezyme update from Genzyme!

Hannah is going to get her treatments!! 

I talked to my contact on Friday who told me that Hannah and the other GD23 children will not miss any treatments.  These children (and all children under 18 who have Gaucher’s disease) are their top priority in terms of receiving the rations of what is left during their Cerezyme shortage.  The official announcement was posted at the National Gaucher Foundation website, and it lists Hannah as Group 1A in terms of being one of the most vulnerable patients.

Group 1: Most vulnerable patients

a. Infants, children and adolescents (less than or equal to 18 years old) and patients with type 3 Gaucher disease should continue receiving Cerezyme according to their current dose and frequency, without any interruptions.

I just had a feeling, deep in my heart, that Genzyme would take care of Hannah and the other type 2 and type 3 kids.  That’s why when a different Boston Globe reporter called me a few days after the original article appeared with Hannah and wanted my new reaction to the extended delay that was just announced, I just told the reporter “Let’s see what they do before we start to freak out.”   

Thankfully, this is one less worry that we have to deal with.  Hannah will continue to get her treatment without missing anything.