Saturday, September 22, 2012

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 "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 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.


  1. Over and over I am in awe of you.This is a mountain in front of you, BUT you just keep climbing.What you have done for mito and other families is incredible. Some of the commments were crude and heartless and hard to read. I am sure the parents of those commentors have never been able to say they were proud of them. I on the other hand can say it is a privledge to say you are one of my daughters and my heart bursts with pride. I love you and the incredible person you are. MOM aka DEDE (I want that pic)

  2. I just wanted to reach out to you - another Leigh's family looking for a cure. We were approved for the trial, but Edison ran out of money & our child is so medically fragile he may not make a trip:( Our blog: His Facebook page: Beelieve in Braden

    I'd love to connect!! Our Braden is 6, diagnosed at 2.5 years old.

  3. I don't know Rachelle and I certainly don't know her circumstances. What I do know is this, you are one of the strongest women I've ever known. Every day I marvel at the strength you have and know that Will is a lucky boy to have you and Neil in his corner. I look at his smile and melt. I'm thankful that he's having the opportunity to smile and be happy.

  4. It was a really great article, Lori! Hoping to meet you (and Will) one of these days at the local gatherings!