I came across this website this morning, and the information was so easy to understand, that I thought I would share it. They also have a pamphlet which is great to print out and send to people. The key symptoms of Type 3 NGD: Eye Movements Imagine you are standing at the side of a […]
[Continue reading...]Official Gaucher’s Disease type 3 and type 2 Research Update
18 Mar by
Here is all the latest research updates that pertain to GD23. This was compiled by Dr. Raphael Schiffmann (world-renowned GD23 expert and Hannah’s neurologist) and Greg Marces, founder of the Children’s Gaucher Research Fund. Unfortunately, these type of updates only come every 6 months. This is why we need money for research — there is […]
[Continue reading...]Just feeling angry today
18 Mar by
After slowing down for the past week or so, I’ve really done some thinking. I know, very dangerous. I realized that I am very angry, very disappointed, and just downright pissed. I’m angry that Hannah is sick with this type of disease. She is such a beautiful, sweet baby. I’m angry that I am constantly […]
[Continue reading...]WishUponAHero.com — Making wishes come true
18 Mar by
I came across this site this morning after a facebook friend posted it – http://www.wishuponahero.com What I found was really fascinating. This site was created after 9/11, and people can request wishes for anything from the simple to the big. Other people can grant these wishes if they could help. Of course, the skeptic in me […]
[Continue reading...]DNA Sequencing Results
17 Mar by
Just got an email from Hannah’s genetics doctor’s research coordinator. The results aren’t in yet, but she was told to check back on Monday. The sample was sent to them on February 6th, and we were told 6 weeks. Positive thoughts for type 3, type 3, type 3 — heck, even a very unique type […]
[Continue reading...]Just some pics to share!
16 Mar by
Just wanted to share some pics of Hannah this past weekend. I can’t believe she is already 7-1/2 months old! There are many more pics I just uploaded at Facebook and Shutterfly!
[Continue reading...]
Latest Comments