Not only do we have the big fundraiser on Monday afternoon, but Hannah is also getting her Cerezyme treatment at the same time. She made a huge impression at the school last week with the kids, but I think we are going to let her be more low-key on Monday, as her treatments seem to […]
[Continue reading...]Sea of Denim at Vanderburg Elementary School!
26 Feb by
The World Rare Disease Day event at the kids’ school was a HUGE success. I would even dare to say it was a massive, extraordinary, amazing success. When we got to the school with Hannah at 1:30 pm, we saw quite a few kids playing on the playground. About 90% of them were wearing […]
[Continue reading...]The Protalix/FDA denial for Gaucher drug
26 Feb by
The FDA denied Protalix’s new Gaucher drug this past week. I have received a number of emails from people asking me how this affects Hannah. This has no affect on Hannah at all. This drug is designed only for type 1 and would not even be an option for Hannah. Unfortunately, no one is working […]
[Continue reading...]Fox 5 interview – here it is!!
26 Feb by
Of course, I am horribly critical of myself, but I think I did a decent job on this interview (but boy do I look old and tired in this 4-minute piece!). I haven’t figured out how to embed it in here yet, but hopefully I can get a digital copy of it so I […]
[Continue reading...]Fox 5 Morning Interview!
25 Feb by
Hannah and I did our interview this morning on Fox 5 morning news with Jason at 7:45 am. I am nervous about seeing the playback because I was beyond exhausted since I haven’t been to sleep since I woke up at 1 pm yesterday since I still had to do Hannah’s night nursing last night. […]
[Continue reading...]Favorite Hannah Videos (reminiscing time)
25 Feb by
I have been getting so wrapped up in all the events for the next few days that I took some time going back through some of the videos of Hannah I have taken over the past two years. She is so dang cute! It is hard because I can see the disease progression […]
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