Speechless & Humbled

I woke up next to the most wonderful baby boy in the whole world this morning. I watched him wake up, stretching, fluttering his eyes, a little cough, a red cheek wet from drool.

He has no idea what he did yesterday. He made all our family, friends and even many strangers take action to learn about mitochondrial disease.

I am just so deeply humbled right now I can't even begin to explain it. My heart is so heavy so many days, but I woke up feeling like we had made a difference.

We're watching the ever dreaded Barney right now, Will is trying to sing along. I am sitting here looking at the incredible things that happened yesterday.....

The story was posted about 7:45 a.m. CST on Friday morning on CNN.com "health tab" in the general list. By about noon the story had jumped to the lead health story and made it to the CNN home page. Mito was the top trending health article on CNN yesterday. It even beat "Lady Gaga Smokes Pot" story for a long time! It remains the top "health" tab story this morning.

So what good came from this? Things I know for sure:
1. Thousands of people who never knew this disease even existed now know.
2. UMDF received a call from a woman on a mission to help her child and saw the article.
3. UMDF also received a call from someone who wants to run the Chicago marathon to raise money for UMDF.
4. I received two emails from parents on a similar journey and are searching for a diagnosis, but because so many (doctors included) don't know about Mitochondrial disease they don't know what to offer.
5. We are incredibly lucky - mostly that we live in a place that offers extraordinary access to care. Without Dr. Koenig and her entire team at the UT Mitochondrial Center of Excellence we would be lost.

And last, I am deeply humbled. The efforts our family, friends and strangers have taken in the past 24 hours leaves me without words. Please know how deeply we appreciate the posts, forwards, special photography discounts (Sara Catherine!) and the outpouring of support.

I have often wondered why Will. Why us? I continue to wonder that, but the past 24 hours have opened my eyes. I would of course prefer to be blind to all of this world, but we're not. So, let's take action. It's this kind of awareness that I truly believe will help Will and all our mito friends. Awareness = Education = Research = Funding = Treatment = Cure.

Of the 250+ comments on the CNN.com article, there are some really mean ones, "wacky" ones, misinformed ones, but the vast majority are so heartwarming and meaningful to us. Thanks to all those who posted the nice ones and for our "defenders" - pretty sure an STD didn't cause this wretched disease as some one commented... LOL all you can do is laugh sometimes.

So where do we go from here? All this great awareness... knowledge... compassion... I'm asking you to try and pick one day a week to keep spreading awareness.

YOU are making a difference in our world and in so many others. Thank you, a million times over. I'll make an awkward request, if you have some spare change, even five dollars would you please consider giving to UMDF? They fund research and grant programs to help all those with mito, including kids like Will. It's why groups like Edison / EPI-743 are starting to come together.

I want to leave with one special thank you to a very special person. Rachelle Khalaf. She is the reason why this whole thing came together. Her family has its own special circumstances and she went out of her way to make this possible. She continues to amaze me in all that she does. People have said I'm strong, but Rachelle might just be the strongest woman I know. Thank you.

Edelman Escape

Definition of Escape: An act of breaking free from confinement or control

Every year my employer, Edelman, offers a program to its employees to “escape” the office and follow a dream they otherwise would not get to pursue. If you win, you get $1,000 and a week sabbatical to make this dream happen. I kind of think I work for a pretty cool company and I’m not just saying that J

On a whim, I decided to apply. My big escape, the United Mitochondrial Disease Foundation annual symposium and Capitol Hill day. My application was unanimously voted in favor for and I am one of 10 winners for the 2012 Edelman Escape program.

I am humbled, honored, ecstatic, nervous, nauseated and pretty happy that we get to do this. To be able to talk directly to legislators that influence where and how monies are applied for disease funding is phenomenal. While my sneaking suspicion is that many of our elected officials don’t care too much about what their constituents have to say on the matter, at least not as much as they do what big pharma or big money says they should do, I still am very proud to get to speak on behalf of Will and others with Mito.

In addition to giving these legislators a piece of my mind asking them to fund Mito projects, Neil and I are both going to attend the symposium and get to network with other doctors, researchers, parents and families. I pretty much started crying at the thought of being able to connect with others in this world. (reference, special needs parenting post, “it’s lonely”).

This is something that could give Will the extra leg up when it comes to new therapies, tools, trials, studies or supplements. I think I need to work on managing my expectations, no one is going to unveil the cure for Mito at this conference, but hopefully one day I will be able to attend one that does.  

While we are in Washington D.C. we’re going to meet up with some good friends that moved there for work so the trip will include some fun too!

If you are planning to attend, please let me know as I’d love to find some time to visit.

Will at age 15 months above. In the bath tub and on the couch. He sure has thinned out! 

Been Thinking About Donating?

Have you been thinking about giving money to UMDF to help fund research to find a cure for Mito? Might I suggest tomorrow be the day!

REMINDER TOMORROW IS the Pittsburgh Foundation's "Day of Giving".

You can help the United Mitochondrial Disease Foundation raise valuable matching funds from
The Pittsburgh Foundation on Tuesday, October 4th when you make a credit card gift to UMDF through the www.pittsburghgives.org website.

The Pittsburgh Foundation has designated October 4th  as a “Day of Giving” and for a 24-hour period will provide matching monies to gifts given through “PittsburghGives.” The website -- www.pittsburghgives.org -- was developed by The Pittsburgh Foundation to help donors learn about the mission, programs, leadership and financial information of some 400 nonprofits like UMDF.

Please remember that the matching period is Tuesday October 4, 2011 from
Midnight to 11:59:59 p.m.

• You will have 24 hours to give! All credit card contributions on the “PittsburghGives” site during this period will receive a portion of the matching dollars.
• All are welcome to make a gift; you do not have to be a Pittsburgh or Western Pennsylvania resident to participate. To help UMDF raise matching funds you must go to www.pittsburghgives.org  -- follow the directions, and make your credit card donation of
  $25 or more to UMDF on that site.

Thank you for your continuing generosity.

Stranger Friends

What does a four year Aggie baseball team letterman and now father of three children have in common with Will?

A few weeks ago I would have said nothing. Well that's not the case. Through Neil's business interactions, he met a man named Sean Heaney. Sean was helping Neil's company set up insurance and other various important things for all the employees. As he and Neil got to talking, Neil told him about Will and the Leigh's Disease.

A few short days later, Neil comes home and tells me that this guy, a total stranger to Will, wants to run the San Antonio Half Marathon in Will's honor AND to help raise money to find a cure.

This stranger is now a friend.

I hope that all of our friends will go to Sean's website and consider cheering him on in his admirable quest to help Will and other families.

www.umdf.org/running4will

Thank you Sean from the bottom of our hearts. It means so much to us. Good luck on Nov. 13. We will be cheering you on from Houston. Will has a pretty loud voice, so you might even hear him.