I read an article a while back that when you are going through this “special needs/life-limiting disease” lifestyle change, you need to find just one person who you can connect with completely. Someone who understands your fears, your chaotic thoughts, and your many stages of grief. It can’t be your spouse or family member, the […]
[Continue reading...]Cause and Effect — So Simple yet…
9 Nov by
Hannah is now 15-1/2 months old. Yet to this day, I still couldn’t tell you how much she actually comprehends on what level. We talk to her all the time, and there are only a handful of “commands” or communication that she understands. “Uppies” –> She knows that means we are picking her up and […]
[Continue reading...]Genzyme to Evaluate to-BBB’s Technology for Delivering Biologics to the Brain
6 Nov by
This could be HUGE!!! I’m waiting to hear back from Genzyme to get more details — Cerezyme, Genzyme’s product, delivered to the brain! That could be what we have been waiting for!!!! http://www.genengnews.com/news/bnitem.aspx?name=67331403 Nov 3 2009, 11:02 AM EST Genzyme to Evaluate to-BBB’s Technology for Delivering Biologics to the Brain GEN News Highlights Genzyme […]
[Continue reading...]Good and the Bad
6 Nov by
It has been a rough couple of months. I still feel like we aren’t anywhere close to being settled in this new “special needs parenting” life. I guess it is a process, a journey, and not a quick sprint to a destination. Along the way, I have seen the “real” in people in my […]
[Continue reading...]Yeah, it has been a while…
30 Oct by
I realized tonight that I haven’t posted in a week or so. There is a lot of stuff going on, but it mostly is just still trying to get into a routine with all her therapies, doctor visits, and the rest of our family life. We meet with Dr. Roy, the otolaryngologist, next week to […]
[Continue reading...]The Parkinson’s Disease – Gaucher Disease link
23 Oct by
What we have known for a few months has finally started hitting the mainstream media now as well as some other medical sites. There are just a few…. Question is, now how can we capitalize on this and get the Parkinson’s community to start paying attention to our Gaucher kids? Gaucher disease linked to Parkinson’s […]
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