“Little Miss Hannah – Our Fight Against Gaucher’s Disease type 2 or 3″

http://www.littlemisshannah.com

I use my blog as a means for therapy, to create awareness for her incredibly rare disease, and to share my journey caring for a progressively deterioriating special needs child while we fight for some kind of treatment.

Originally back in 1999 when we started the process to create our family. But we started this blog back when our daughter was born, as they started searching for answers on her second day of life.

Life with Hannah, rare disease news, frustrations with the lack of awareness, etc.

Other special needs blogs and rare disease blogs like “Overcoming Movement Disorder,” Addi and Cassi Hempel’s blog (www.addiandcassi.com), and ACherishedAngel.com (another boy with Hannah’s disease).

Blog from your heart. Don’t start blogging for income, do it because it is the best release you can find.

I always respond to my comments, but usually off the blog.

Absolutely!

Not really.

Always and whenever

Too much time! At least 10 hours a week.

sometimes

I was blogging before there were blogs!

katespot.com

My family, other parents of children with severe special needs and rare diseases

Nope, but I do contribute posts at 5minutesforspecialneeds.com and theprojectcharity.com

It has given me an outlet to share my feelings (cheaper than any therapist), to create awareness for my daughter’s disease, and to gain insight and suggestions from my viewers on different aspects of raising Hannah.