I found out some really interesting information about a possible treatment assistance (not a full treatment) today regarding a pharmacological chaperone concept. I’ll share more of the details once they go public. However, after learning more, it may not be advantageous for Hannah because of her level of enzyme production, but I’m still going to see how this plays out.
It is good to know what is going on out there.
I have only found two researcher groups so far that are looking into GD2 and GD3. I’m still looking though!
 We turned Hannah into a “paci baby.”  When she was born, she really wasn’t into it at all.  It wasn’t until she was getting her blood drawn twice a day or more that we started pushing it to help her during those procedures.  It really came in handy once we started doing more invasive procedures such as venous blood draws, skin biopsy, ultrasounds, doppler studies, skeletal studies, etc.  She would suck so hard on it during those times, you can how much in pain she was.
We turned Hannah into a “paci baby.”  When she was born, she really wasn’t into it at all.  It wasn’t until she was getting her blood drawn twice a day or more that we started pushing it to help her during those procedures.  It really came in handy once we started doing more invasive procedures such as venous blood draws, skin biopsy, ultrasounds, doppler studies, skeletal studies, etc.  She would suck so hard on it during those times, you can how much in pain she was.


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