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.

Friday, July 8, 2011

Birthday Wishes

I hesitate to post, because this information is not on the blog yet, but Eithene celebrated her fifth birthday early because mitochondrial disease was progressing so quickly. Today she took her last breath. My heart aches for her family. Even in faith, it is difficult to send your little one off into the eternities while we are held back in mortality. I do not understand these things at all. I do not understand why children suffer or die. Prayers go out to her family.

Nearly four years ago, we welcomed our 7th child into our home. Bridget was born a little early, and spent 10 days in the NICU before we brought her home. She continued to have difficulties at home, but we weren't sure if that was normal due to her prematurity. We were very worried about her, and especially because the difficulties she had resembled what we had seen with Dominic. And then she had the same crisis event, and died just like Dominic. On July 18th, Bridget would be turning four.

We never have had a birthday party for her, although we'd already been planning her first birthday. I was trying to take a picture every day to create a slideshow for her big bash to show all who came to celebrate how quickly she grew and changed. I am so grateful for my diligence in taking pictures, although I did miss a couple of days, and we didn't get to use them for the reason I'd taken them.

So Bridget's birthday is soon! She'd be turning 4. I want to have a celebration of sorts for her life. A way to honor that her life, though brief, had a purpose and that she continues to have an influence here, she is still very much loved, and she lives (though we are separated by time).

We believe Bridget died from mitochondrial disease, but must wait for improved testing for a genetic cause of death. Would you donate $4 for her 4th bday to help our 4 Dominic, 4 Bridget, 4 Us, 4EVER Energy for Life Utah team raise funds for research to give us more understanding? If you'd like to donate just click a team member's name on the site, then click the "Donate" button on the right hand side of that page.

All of the money donated goes to the United Mitochondrial Disease Foundation. This organization has funded more mito research than any other organization outside of the government. They are a non-profit 501(c)(3).

We have had a whole lot of appointments with specialists lately. There is a whole lot more coming. And I am not ready to update on all of it. More and more, though, it seems important that we have better testing, effective treatments, and more understanding about mitochondrial disease. I hope that if you are able to help us in this way that you will be part of Bridget's birthday
celebration this year.