Mitochondrial Disease: Jeans for Genes
An Amazing Response To a Simple Campaign Raising Awareness for Rare Disease Day and Mitochondrial Disease Many of us struggle with not knowing how we can make an impact on Rare Disease. Whether we are faced with the day-to-day difficulties of a rare disease itself, or we are passerby’s watching others’ demanding fight – [...]
PATIENT STORIES OF HOPE AND INSPIRATION
‘MEET KEAGAN!’ Our son Keagan was born healthy and happy at 37 weeks on November 21, 2006 at 5 lbs., 12 oz, 18 inches long. He was perfect and came home 24 hours later. He was completely different from his brother Sebastian and was sleeping a lot, gaining weight, and was doing really well. [...]
Blog Hop for Rare Disease – Please Read, Share and Raise Awareness!
There are less than 30 days to World Rare Disease Day on February 29. We kick off our campaign this year as host of a Rare Disease Blog Hop. Over 40 bloggers united to blog today to raise awareness about this important day and on ways that you can get involved. The statistics around rare [...]
Designing The Perfect Room
I’M BLOGGING!!! Well, I’m trying. I thought it would be a neat experience to blog about turning my daughters’ nursery into a big girls’ room. My daughters are severely disabled due to mitochondrial encephalomyopathy. The goal is to get information from & to other special needs parents to encourage idea-sharing & inspiration beyond “this is [...]
The Process of Saying Goodbye
Living life beside a child dealing with chronic/terminal illness is a life I’m not sure anyone would ever wish upon another human being. It’s a life that often begins with saying goodbye — a life where every moment is questioned to be the last. If you look really hard — Is it possible that this [...]
Wanting What Others Have…
The other day I attended an absolutely beautiful baby shower for a friend who will soon welcome a little girl into this world. I had no expectation on how I would feel going to a baby shower, as this was my first one since my little boy died. There is something about being in a [...]
The View From This Side…
In all honesty, I never once imagined that I would ever be on this side. I like to live life on the edge — defying the odds. I’m a bit of a control freak, but just a bit — maybe. When our world came to a sudden halt four years ago, with the early birth [...]
Living in a cup is half empty world.
We all have heard of the cup is half empty/full debate. Last week I was meeting with a group of moms and this very topic was discussed. We all went around the room and stated if we were a cup is half empty or a cup is half full type person. As the moms were [...]