My Washington and surrounding mito families ....

You've got homework....

We need to put the "heat" under Edison Pharmacueticala, to push forward EPI-743 so it is available at Seattle Children's Hospital TODAY!!!
Children's has done their part...there is so much frustration because it should be here and it is not.
I am asking you to write a letter to Guy Miller, and his assistant,Lorraine Gilmore.
gmiller@edisonpharma.com, LGilmore@edisonpharma.com

Any of my friends here, that personally know Hudson and our family, feel free to write as well....grandparents, aunts, uncles, any family members or friends, ANYONE who feels compelled to write, go for it!!!
Thanks!

Here. Is a copy of my letter:


Dear Mr. Miller,
Dear Ms. Gilmore,

I am writing in regards to my son Hudson, and the study EPI-743.
Hudson suffers from Mitochondrial disease, and is one of those individuals who it attacks almost every part of his body in catastrophic ways.

We have been waiting patiently, praying this study drug would become available at Seattle Children's Hospital, in hopes that Hudson would be able to participate.
We need hope. At this time, as you know, there is no cure for this catastrophic disease that so many children suffer from, EPI-743 gives hope. Hope for a change for the better in the lives of children who desperately need help with a disease that gives no hope.

I am not sure why it is still not available at Seattle Children's. What I do know, is time is running out for so many children, the clock is ticking and we need this to be an option NOW for our precious babies. I say "our" because I am connected to other Mito families here in Seattle, that are sitting, waiting patiently like myself. We wait, we wonder if this could be the drug that makes a difference in the quality of our child's life, we wonder how we could scrape enough money and find the time to put our lives on hold and fly our kids to another hospital, in another state to give our child this option.
For me it is impossible. I am single parenting three children, I can not scrape the money or put my life on hold....this needs to be available here, in Seattle, where Dr. Saneto knows Hudson personally and all his struggles and history with this disease.

I do not want to be one of those parents left to wonder if this drug would have helped my child.
Whatever the road block, whatever is causing this to be in a holding pattern and making it not available today at Seattle Children's, I am personally asking things to be feverishly pushed forward NOW. There is no time time to waste.
If you were to look in the eyes of my very sick Hudson, you would know he and all of his mito buddies here, are worth putting forth the extra effort to make this available.
I am a mom trying to do the very best for my son, please do what you can to help me do that.

Thanks for your time,

Debbie