Tonight while I was downstairs, my hubby told me to come upstairs because Hannah looked blotchy. Of course I ran up the stairs to check. Sure enough, her face was really blotchy, especially on her upper eyelids, and her eyes were watering like crazy. She was acting like she wasn’t feeling that great. Twenty minutes earlier, […]
[Continue reading...]Balancing Family Life after a Diagnosis
21 Feb by
My new Houston Examiner.com Special Needs Article… Please take a moment to click on the link above to read the entry there. The more page views I have, the more chance I have of becoming featured on their main pages! But since this is Hannah’s story, I want the article here too. —————————————————————————————- Even though […]
[Continue reading...]What the previous post means…
21 Feb by
I sent Dr. S. an email asking him what all that meant that I posted earlier this evening, and here was his response: Dr. Futerman’s lab is doing the best scientific work on neuronopathic Gaucher disease and as you know much of it is supported by CGRF. What they say in this website is that […]
[Continue reading...]Specific Gaucher’s Disease Type 2 and Type 3 Research
21 Feb by
Disclaimer! I have absolutely NO CLUE what this means, but this is the group that the Children’s Gaucher’s Research Fund is directly funding to work on GD2/3. I will find out what this means and how it may affect Hannah! Pathophysiology of sphingolipid storage diseases We are attempting to delineate the molecular mechanisms by which […]
[Continue reading...]Genzyme Oral Pill for Gaucher’s Succeeds in Trial
21 Feb by
Genzyme Oral Pill for Gaucher’s Succeeds in Trial, Aims to Extend Key Revenue Stream Genzyme (NASDAQ:GENZ) said this afternoon that its next-generation, oral drug for Gaucher disease passed a mid-stage clinical trial, providing a degree of assurance that the Cambridge, MA-based biotech powerhouse can sustain its franchise for treating the rare genetic disease. The study, […]
[Continue reading...]Becoming a Paranoid Parent
20 Feb by
I never really considered myself a paranoid parent or even an overprotective parent before. But last night I realized that I have become totally paranoid when it comes to Hannah, especially when she is sleeping. She is a noisy sleeper. You can hear her breathing loudly at times, as she sometimes even wakes herself up […]
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