Our Fight against Gaucher's Disease type 2 or 3
This was the cost of the Infusion Center, the 3+ hours we were there, as well as the cost of the Cerezyme for Hannah. Remember, Cerezyme is used based on weight, and Hannah only weighs 16 pounds. This doesn’t include all her other doctors and procedures — this is JUST her biweekly infusion. Cerezyme – […]
[Continue reading...]There are times when I forget that Hannah is sick. We are so lucky that she acts so healthy and is in no pain. But then I start thinking about it, and it really gets me down. I go through periods of feeling optomistic that we are going to dodge the “big bullet” and only […]
[Continue reading...]I’ve been so uneasy about tomorrow’s sedated hearing test since receiving multiple parents of type 2/3 kids sharing their stories via comments here and in emails. Then, I received this email from Dr. E., Hannah’s lead doctor: “The sedation should not be a problem. However, the test is not crucial for her management at the […]
[Continue reading...]I received this email from another type 2/3 parent, and obviously, it made me very concerned. did read your latest post about Hannah being sedated and wanted to make sure that you check with a gaucher specialist before doing this… I learned the hard way.. my son was sedated for a simple MRI but as soon […]
[Continue reading...]I have no clue how old this info is (the website says 1997), but it is worth looking into seeing how this panned out… —————————————————— In the past couple of years, attempts to treat Type 2 babies with Ceredase have been made in one case in America by Prof Gregory Grabowski, Director of Genetics, Children’s […]
[Continue reading...]We have a lot of firsts this week… Tuesday, we start with M., the occupational therapist. She is going to work with us on getting Hannah accepting solid foods (she still has the automatic tongue thrust when we try to feed her), drinking her bottle without having it dribble out of her mouth like a fountain, and […]
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