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.

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1 comment:

  1. Wow, she is beautiful!!! Im sorry you have had a lot of appointments to process lately. I hope you get useful information though!!

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