Thursday, March 3, 2011

Soon to be official - Mitochondrial Disease Awareness Week in Utah!

Maggie Agnew passed away on Saturday night. The anniversary of when Samuel McCluskey passed away is coming up in a few weeks. So many children have passed away from Mitochondrial Disease-- like Samuel Knight, Gavin Owens, Piper Younglove, and Abby Halford.

Mitochondrial Disease is devastating. Hearing the news that another child has passed away is devastating. It all makes me feel so helpless.

Yesterday we got the reports from seeing the specialist a couple of weeks ago, and it still just says "Diagnosis: Possible Mitochondrial Disease." There is still no real answer as to why Dominic passed away, or why Bridget passed away. And no one knows really what to tell us about the rest of us. They keep doing this test or that test, and now they tell us just to wait for the next test to be out. I can't help but to be frustrated, and already having had to bury two children knowing that if it is mito, and we don't know, but it might be mito, I just want to do everything I can to make sure we do all we can to keep my from having to bury more. If it is not mito, I sure would like to figure out what we are dealing with to know if we're doing all we need to be.

So when I got home from the dentist this morning, after just picking up funeral programs, I was feeling so discouraged. Then I saw the update about the Resolution we submitted to the Utah Legislature for consideration during this session: HJR35 has PASSED! Now it goes on to the Governor!

To all those who have contacted legislators, forwarded this request to friends, etc - THANK YOU for all of your efforts to help with HJR35: Utah Mitochondrial Disease Awareness Week Joint Resolution.

HJR35 has passed both the House and the Senate, signed by the President in the Senate and the House Speaker and is now on to the Governor! This means Utah will have an official Mitochondrial Disease Awareness Week in September, unless Gov. Herbert vetoes it. The Governor has said he is hoping to avoid any vetoes, if possible, and I am told by those working at the legislature that it is very likely he will sign this! So if you want to make a quick call up to the Governor's office to kindly ask him to sign this bill ASAP, he can feel more comfortable that we're behind him when he signs this and makes it official.

801-538-1000
800-705-2464

You can send a message online from his website, if you'd prefer.

Here's the list of passed bills. Once the Governor signs it, there will be a date listed for that.

I know that having Sean and Michelle Agnew bring Maggie to the legislature made a real difference, and made an impression on the legislators about how devastating this disease is. Many have told me how much an impression Maggie made on them. Knowing HJR35 results in an official Mito Awareness Week seems to make Maggie's efforts in her last days of life that much more amazing. She is a real hero who made a difference in so many ways during her short life.

For Maggie Agnew, Samuel McCluskey, and so many others who have already fought their fight, I will keep doing what I can to help in the fight against Mitochondrial Disease. I invite all those in Utah, and anyone reading, to participate in the upcoming Energy for Life walk, and with other activities to commemorate the Awareness week, Sept 5-11, 2011.

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