Every two weeks since she was 6 months old, Hannah has received her Cerezyme infusion for her Gaucher’s disease. It takes about 2-1/2 hours, and most of the time she sleeps through the infusion.
They say it doesn’t cross the blood-brain barrier, which I know is true, but it does not only prolong her time with us but gives her a better quality of life as well by ridding her body of the bad fat in the spleen, liver, bones, and lungs.
Someday they will figure out how to make it help in the brain. I just hope that someday is while Hannah is still here with us.
I know we talked about this before- the blood brain barrier issue- and even though the drug doesn’t go there, we know it does help in a profound way. I believe if Noah had been able to stay on his dose during the shortage (and I sooo appreciated you going to bat for him several times), we would not be seeing these seizures yet. I think it would have staved them off for a later time. The drug does more than they can explain. I know you are grateful that Hannah is a sweet, happy and joyful child, but I find it unfair that there are so many drugs developed to treat type 1. Think of all the dollars that could have gone towards research and imagine if they collectively collaborated! All this independant research, even though they share their specimens and research, is not enough. Ok, rant over. It’s so hard to not be angry about this after meeting Hannah. And over my son. And all the other kids out there who suffer.