It is official.
Hannah’s “case” is being taken over by a new genetics doctor. She is a world reknown expert on lysosomal storage diseases, and the director of genetics at that hospital. The youngest patient she had ever seen with Gaucher’s was 6 years old, so she is very interested in working with us because of how young Hannah presented with Gaucher’s (at birth). From what the local Genzyme rep told me yesterday (who gave me a heads up that this might happen), she definitely knows her stuff.
We are still keeping our appointment with Dr. S., the Gaucher’s expert, up in Dallas. However, Dr. E (the new doctor) will be taking over as Hannah’s primary doctor for Hannah’s condition. After all, Dr. S. is a Gaucher’s specialist whereas Dr. E is more generalized in all the lysosomal storage diseases (including Gaucher’s and Niemann Pick Disease).
It really is a great feeling to know that we are getting two of the best doctors in the country for her now. Since she is a novelty in this Gaucher’s Disease world, she is definitely getting a lot more attention than I would have expected. Like I keep saying…maybe she holds the answer for a cure or new treatment! (Hey, a mom can dream!)
That’s great that she is getting such excellent care. My thought was that since she presented so young, there might be a chance that they could reverse it.