Monday, December 3, 2012

Let's Walk!

If a pictures says a thousand words, then a video says...a story.

Seth showing how old he is with his fingers 
I write this post as Seth sits in my lap recovering from croup and after about 45 minutes of respiratory distress last night.  He is feeble today, but improving.  We had a scare last night similar to when he choked on a coin as I wrote about in my post Premonition and Perturbation.

I will briefly mention this scare because it relates to my overall goal of raising awareness.  Last night, Becky, Sydney, Seth, and I were driving one of Sydney's friends home around 10pm.  We were, in what most people would call "the middle of nowhere" Concho, AZ, and at least 30 minutes from any hospital when suddenly, Seth started having a difficult time breathing.  He has had a cold for the past few days and yesterday, he started to loose his voice and cough.  After his symptoms started, I took him outside of the car to allow him to breath some cold air.  This helped some but not enough.  I got back in the car and I drove, faster than I should have, to the Emergency Room in Show Low, AZ.

As I explained to the triage nurse, my son has Leigh's Disease, a type of Mitochondrial Disease...  These upper airway restrictive illnesses can kill any child, but my son is more susceptible.  He already struggles for oxygen.

"Well, his oxygen saturation is 97%."  Yes, but look at his respiratory rate!  Look at his intercostal and supraclavicular retractions!  Look how fatigued and pale he looks!  Listen, I'm a physician assistant and I know my son!  Can you give him some oxygen!  It was amazing how soon he started acting like Seth again after he received oxygen.

Just ask any parents who have children with Mitochondrial Disease who have had to take their kids to the Emergency Room.  Many times, us parents end up educating the medical staff about Mitochondrial Disease.

Luckily, I knew the doctors and the physician assistant who were on shift at the emergency department.  After briefly explaining his Leigh like Mitochondrial Disease to them, their response was immediately turned to action: "can he have dexamethasone?"  Yes.  He can have all the medications used to treat croup.  "We'll get x-rays of his chest and soft tissue of the neck.  Is there anything else we should be doing?"

I am not faulting or pointing fingers.  I don't do that.  The hospital in Show Low is an excellent hospital.  The triage nurse was a great nurse doing her job.  I have one objective: to raise awareness of MITOCHONDRIAL DISEASE!!!  Had I gone up to the front window of any ER and said "My son is having an asthma attack" I would not have had to fight as much for him.

Seth & Becky in the emergency room

It's Time to Walk!!!

I am very thankful for everyone who has watched our video called Our Mitochondrial Disease Journey that I posted on YouTube.  As of today, there have been over 750 views.

The day after I posted this video, our family was sitting at the dinner table discussing the day and the video.  Sierra was making fun of herself and everyone else.  The picture that I have as a thumbnail for the video and is shown below says a thousand words.  Sierra stated how the 2 of the 5 pictures of her in the video were not very favorable towards her.  "My eyes are closed and my knee is out in one picture.  In the other picture, I'm flexing my muscles...with that big rock (Half Dome) in the background".

Sydney looks as if she either has sand down her pants from Seth and his shovel or was just stung by a jellyfish.  Seth, well if you know Seth, he is just as happy sitting in his car seat for the 10 hour drive to Monterey, California as he is playing in the sand.  Joy, elation, jubilant are just some of the words to describe him.

The best was Sierra making fun of Spencer.  "Spencer is standing there in front of everyone, flexing his muscles, showing off, and he has sand all over him.  He even has sand on his face and in his teeth" (actually, just his braces, not really sand).

Beaches of Monterey, California Summer 2012

Spencer's comeback line was classic Spencer. "Well Sierra, I just finished making out with a mermaid".  Quick and comical which reminds me of his Grandpa Warnick and Becky's and my friend from high school Paul Smith.

Seth was walking around the house for the first 2 days after I posted the video watching it on my iPad multiple times like he was watching a Barney video (maybe that is why there is over 700 views).  Sydney, in her innocent way, was just happy to be on the internet.  Spencer was not very happy to have so much attention brought to himself.

I am excited that so many people have watched this video and have looked at this blog.  Last month, over 600 people looked at my blog.  I am not looking for people to feel sorry for me and my family. That provides no benefit.  I am looking to raise awareness of a disease that is more common than childhood cancer!  I want better treatment options and I want to find a cure.  My hope is that maybe a few more people are now aware of this disease; aware of how it effects people and families.  Aware that there are faces to the thousands of people who suffer from Mitochondrial Disease.

This disease has transformed my life in a way that is not optimal.  My thought processes, daily routine, future plans all revolve around this disease.  So...let's walk!  It is time for me to turn my sadness of how this disease has transformed my life and turn those stagnant emotions into action.  Let's walk for those who can't!  Let's walk in memory of those who have died from this disease.  Yes, people of Arizona and around the world, let's walk!  I'm tired of hearing story after story of this disease killing children.  I'm sick of this disease being underfunded and under recognized for what it is and how it is inter-related to so many other diseases. Let's walk for those...damn it...let's just walk!

Arizona Mito Walk

December 15, 2012 in Phoenix, Arizona



  1. Love it! You do such a great job in raising awareness. Keep it up! And please know we will be there in spirit. We wish we could be there in person. Maybe next year. Love you guys!!!

  2. I always appreciate your blog spots. Misti and both watched your video on YouTube; like always, it was touching. If there is anything you think we can do to help you or your family, please let us know. I tried to see if there was anything "Mito" related going on in our area, but I didn't find the Mito website too user friendly.

    Proud to have you as a friend and colleague.