Tuesday, July 12, 2011

We Can't Go Back - Let's Go 4ward!

About this time last year, I committed to co-chair Utah's first Energy for Life walk. I was inspired mainly by seeing that North Carolina was doing a walk, and as I watched updates about Team Saving Savannah on one of our mito mates' blog, I wanted to do something here to make a difference. I focused first on having our state legislature pass an official resolution designating the first full week of September as Mitochondrial Disease Awareness week. Then we got started on the crowing event of that week.

Last week we had our kick-off party. Our state did not even have a UMDF group last year, so it was hard to know what to expect. But it was amazing as families from our community came together, all affected by mitochondrial disease. Some of us have buried children from this disease. Some of us are caring for children, or are affected ourselves. It was just a touching experience to meet people we had never seen before but felt so much like we already knew each other. I was sad knowing that the reason some weren't there was because their child was in the hospital again.

The blog that inspired me to get started with all this in our state just recently posted about Savannah's upcoming 3rd birthday. She included many pictures of people affected by mito, including Dominic and Bridget and two of our other kids. We are all working to raise more funding for UMDF. Will you consider making a donation?

Our family started a team, and I will say it was an emotional thing for me finding a suitable team name. We have two children who died. And others of us are being evaluated for possible mito. If you've read much of my blog, you'll know we still aren't sure exactly if we have mito in our family. But that is the biggest thing that keeps coming back as we rule other things out, and tests point in that direction. So I needed a team name that could help to remember Dominic and Bridget, and also include all of us. Our name isn't as cute and concise, but we ended up with 4 Dominic, 4 Bridget, 4 Us, 4EVER.

Dominic is our 4th child. Bridget is our 4th daughter. On Monday, it will be 4 years since Bridget's birth. I know I don't have a lot of blog readers, but I'm hoping to have at least 4 of you go to our team and donate $4. It's 4 those who have already succumbed to mito, and 4 those who are now coping with this disease in their lives. It's 4 the future so that we have better testing, better treatments, and eventually 4 the cure.

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