Sunday, September 16, 2018

JOY! And mitochondrial awareness week :)

It is Mitochondrial Awareness Week.

Are you ready?

Are you ready for the onslaught of your friends posting about this crazy disease you have never heard of or maybe heard of in a bio class your sophomore but fell asleep to because it was so boring???

That is this week

We post because we have lost children, we have lost loves, we have lost futures, we have lost strength. We have cried, raged, cursed, begged, borrowed.......

But there is more to that.

We post because we are community. We are not alone. We have hope.

And without hope we are nothing.

Yesterday I went to a wedding of our Mito Mama Angela, her new husband and their mito warrior, Sweet Cal.
 
 
Cal and I approve of the union.
 
I was a lovely wedding but so much more than that.
 
This disease tears people apart. It ruins lives. It ruins families. It takes joy, stomps on it, spits a giant loogie and walks away.
 
Mitochondrial Disease is an asshole.
 
But we are more. We are so much more. We are hope. We are strength. We are community. We are loud.
 
 
 
And in spite of all the obstacles, there is still so much joy to be found
 
 
 
 
Ya'll make me proud.
 
And joyous.
 
Thank you. 

 

Friday, August 31, 2018

Joy


My Bestie Ginger took this photo of me after the Courage Classic.

I am lying on the asphalt because my legs were super-mad at me, I was tired, slightly delirious.

But I was something else.

So stinkin' joyful I could hardly talk.

Seriously.

There. Are. No. Words.

And I'll tell you why. I'll tell you what you all have done this year.

1. Supported a clinic that made us the recipient of a $50,000 NIH grant

2. Brought another major donor into our folds to the tune of $40,000

3. Made us a Mitochondrial Network of Care. The only center in the Rocky Mountain Region

4. Raised $138,000 during the Courage Classic for YOUR mitochondrial clinic in Colorado

5. And finally, your advocacy brought the attention of my amazing company who donated $750,000 to the mental health clinic at Children's Colorado

Ya'll are too much! Too much! How much amazing news can one woman contain?

I will tell you this.....I was about to explode that weekend from so much good.

That picture above, the result of a joy bomb.

Thank you, Thank you, Thank you.

So what happens now?

I'll tell you what happens, the rubber meets the road my friends!

1. Our NIH grant goes to study the CARS gene and supplementation of a certain amino acid- all for mito research

2. Our generous donor is funding a study of POLG1 and the efficacy of a drug currently used for MS- all for mito research

3. Our Network of Care enables us to approach the hospital with a need for social workers dedicated to mitochondrial disease, collaborate with other doctors and further support for  visits to the mitochondrial clinic

4. $138,000 will fund additional research, Ubiquinol supplementation, and keep our mito lab up and running

5. $750,000 will help those Littles in our community who are suffering.

I hope it will help them find joy.

You all bring me joy. You are better than a rainbow colored puppy riding on a Pegasus unicorn.

And that's pretty stinkin' good.





Wednesday, July 25, 2018

This Shark, Swallow you whole

 
 
This photo was from my 40th birthday- six months after we lost Samantha.
 
A friend quoted it perfectly, "And then Heather opened her mouth, took all of her friends and swallowed them whole."
 
And I would have.
 
Because I was so empty.
 
Oh yes dear friends, swallowed you whole. Anaconda ain't got none...
 
But that was 8 years ago. Eight years ago when Missy Moo left us. Eight years ago today.

I still pose with an open mouth


 
 
 
 

 
 
 
 
Even in the final photo.....in front of hundreds of people accepting a great big check...
 
Mouth
 
Wide
 
Open
 
Eight years later, would I still swallow you whole? Nah, I think you might be a tad chewy. Dare I say too spicy?
 
But more importantly, I don't need to anymore. The hunger to replace a famine in my soul has subsided, the want, desire, the miss, it is no longer so gut wrenching and desperate. Eight years later.
 
You all have helped me to fill that void and for that I am forever grateful.
 
So despite the perpetual open mouth, I no longer need to devour you.
 
Perhaps a nibble.



Sunday, July 8, 2018

Hope is Being Able to See that there is Light- Despite all of the Darkness- Desmond Tutu


A mitochondrial diagnosis is dark. And lonely.

Here is where your donation will go to provide some hope and light.

Every 15 minutes a child is diagnosed with a mitochondrial deviation that will manifest by age ten. Since mitochondria generate energy within muscle and organ cells, clinical problems such as seizures, heart and liver issues, vision and hearing loss, muscle weakness, migraines, and developmental delays are prevalent.

Because of the complexity of the disease and the difficulty in getting an accurate diagnosis, mitochondrial disease is considered rare and is grossly underfunded. In 2012, our clinic at the hospital was at risk of closing its doors. The funds raised by our team enabled the clinic to remain open and continue to employ its researchers.

It is because of this team and their amazing efforts that we have a research presence in Colorado.

2013 we purchased a diagnostic piece of equipment for the lab called an Oxygraph. The Oxygraph measures oxygen exchange from one cell to another and can analyze where the breakdown in energy exchange happens.

2014 we contributed funds so that our neurologist could input needed data to make Children’s a part of NAMDEC – the North American Mitochondrial Disease Consortium.

-  This contribution made it possible for Dr. Austin Larson to come to Children’s through a  NAMDEC grant. He joined us as a fellow and is staying on as an Attendee focused on Mitochondrial research, treatment and clinical testing. Dr. Larson spoke and met with families this year at the UMDF conference- we are very excited to have him on board.

-  2015: We continue to support the clinic and bring on another research assistant

-  2016: We sponsor a grant between Dr. Larson and Dr. Green to fund a research project looking at the link between mitochondrial deviations and type one diabetes.

 2017: We have a protocol approved by Children’s Hospital to study mitochondrial disorders specifically in Colorado

-   Stealth Biopharmaceuticals announces that Children’s Colorado will be a trial site for a new mitochondrial drug Elamepretide.  This trial was only granted because of our ability to show sustainable, financial support to the clinic- all through Summits for Samantha. 33 sites were chosen internationally

And in 2018…. Children’s Colorado became part of the Mitochondrial Network of Care; one of 23 national sites.

-  Our researcher was awarded an NIH grant to advance her work. The Oxygraph we purchased was instrumental to her research.

-   We will see our first clinical trial patients in July

-  We continue to provide supplements, support and family grants to our mitochondrial community

What will next year bring????

All because of you.

Monday, June 18, 2018

I would break the law for my child

Nothing like an international crisis to get me writing again.

I've been in a terrible mood. I should probably unplug, stop engaging with those not in my camp, get a pedi..... But nothing like Fathers Day coupled with a side of mass family separation in the news to send me in tailspin.

Okay, tailspin is a slight exaggeration, more of a little hiccup.

But as I accidently got engaged in a argument with someone who lovingly called these Littles at the boarder 'Spawn of Derelicts' , I realized we got some haters running around.

My rational mind screams, do not engage! do not engage! But all the sudden I think I'm Luke Skywalker bulls-eyeing womp rats in my T-16 and I fire. And I am engaged. Shit. It's me and Darth Vader. Or according to some, I'm Darth Vader

Here is what I do know from my own broken, life-long-separated-from-my-own-Littles head.....

We cannot use our children as pawns.

We cannot use our children as pawns.

We cannot. We cannot. We cannot.

This emotion we are toying with is so primal, so instinctual- nothing is more violating to our core than separating us from our Littles.

Put them in an air conditioned facility. Feed them peanut butter and jelly. Put them in front of a nonstop reel playing SpongeBob Squarepants and give them some crayons. Tell yourself you are doing the right thing.

And then go home and smell your child's head. Inhale that primal scent that goes back to the very first time you smelled that sweet head. My god.....nothing smells more pure.

Imagine someone taking that sweet scent away from you.

What would you do?

Is the thought unimaginable? Because it should be.

When Samantha was a babe I 'smuggled' a non FDA seizure drug into the US from Canada. This drug stopped her hypsarythmia and her constant seizing. One evening UPS didn't deliver it on time and I drove four hours to pick it up right before the fulfillment center closed for the weekend. I made it five minutes before they closed.

I sat in my car with this precious medicine in hand and sobbed. Sobbed because I made it. Sobbed because my daughter needed this med that we could not get in the states. Sobbed because we were so very vulnerable and at the mercy of so many others. Sobbed because I would have knocked the door down had it been locked.

We are wired to fight like hell for our kids.

Yes. Polices need to be changed, both sides need to come to the table. But in the meantime, do not underestimate the irreversible harm we are doing to parent and child.

Smell that head. Tickle those feet. We only want what is best for our Littles.


Sunday, March 25, 2018

It's the Only Place I Have to Live In

I have created my own physical activity trifecta.

My very own hat trick:

The Bike

The Swim

The Orange Theory

I KNOW! It's so very trendy right now. It's the cult of the Orange Theory and I have to say they got me. They got me by my expanding biceps.

Seriously, I now have biceps. I came home the other day and flexed my arm in front of Hubs. And he said "Well look at that. I see a muscle."

My body is far from perfect. I have a knee that hates me, my very own neuro-muscular condition that has me on meds and other issues that any 47 year old fights.

But it is mine. And it works. And when I think of the many things I am grateful for in this world, this flawed, functioning body of mine is one.

Yesterday at Orange Theory, I climbed up on the bike (because I can't run on the treadmill....silly knee) and I stared back at myself as I started to pedal. We are gearing up for our silent auction and my Mito Peeps are on my mind.

I thought of Sammers, my brother, our kiddos, our adults.....our people whose bodies can't work like they should.

This body is all I have. It's all any of us have. Be so grateful it gets you out of bed, walks you to the bathroom, gets you to work......climbs you on a bike at Orange Theory.

I am now twenty minutes into my workout, super slimy with sweat, my heart rate has gone beyond the orange zone to the red and I think I might just be a tad pukey.

And I love it.

I love this beating heart. I love that I smell like a high school gym locker. I love that this body works.

This old lady, wonky knee, can't-sneeze-without peeing myself  body.

In less than two weeks we will break bread and pour a glass of grape in honor and in memory of our Loves whose bodies are starved for energy- whose bodies want to be more; Our Mitochondrial Community.

Join us on the 7th. If for the only reason that your body is good place to live.

I'll even flex a muscle :)

http://www.miraclesformito.org/fundraiser2018



Tuesday, March 6, 2018

I Got No Roots

I came up with the idea for this post when on nitrous oxide.
 
So please forgive me if its random....ha! Like my posts aren't. For the record, nitrous oxide is kind of awesome as a controlled substance.

No Whippets.
 
I do not like going to the dentist. At all.
 
I think it started with several wisdom teeth extractions during my teenage years by a man named Dr. Maul.

20 shots of Novocain, I was numb enough to pull those suckers out.....with resistance. Do you know how long those wisdom teeth roots are? They connect to your thigh bone and never let go.
 
Never go to a doctor with the last name Maul.
 Image result for little shop of horrors dentist

Promise me.
 
The Samantha years brought tooth neglect...years of it. I didn't have the time, I had Dr. Maul nightmares and here is the thing about going to the dentist......you walk in and your teeth feel okay. You walk out and your teeth hurt. I had no time for self induced hurt. 
 
After Samantha, I asked one person for a dentist referral. Note to self.....when looking for a referral, ask more than one person. I ended up with Huey Lewis and the News. I kid you not. He knew every 1980's song, He had every teeth whitening kit ever made. His purple rayon blazers were super rad but after my third re-do on a root canal we had to break up.

It was 2011.
 
WHY WAS THIS SO HARD!!!!???? I wondered as my teeth slowly rotted out of my head.
 
Vulnerable.
 
Nothing makes me feel more vulnerable than a dentist.
 
Image result for little shop of horrors dentist
 
 
I'm not sure why....
 
Related image
 
This afternoon I finished my third root canal.....I got no roots. But now I do have a really good dentist who sat next to me before the procedure, held my hand and said, 'what would give me an 'A' today?'
 
And I said 'No pain.'
 
So he strapped on the nitrous oxide (for me, not him), he gave me some headphones and I listened to my new obsession, Hamilton.
 
The below was not the situation, but I find it funny :)  
 Related image

What is my point???

I have none. Did I mention I was on nitrous oxide when I thought this would be a great blog post?

Okay....maybe here it is. Take care of your teeth. That little molar in the back was a part of me for 47 years and in five minutes he was ground down to a stub, never to be heard from again. Adios little tooth. Thanks for hangin' in there. I'm sorry I couldn't do you better.

Second? It's okay to say when you feel super vulnerable and need some help.

Third? Never go to a Dr. Maul.

Monday, February 26, 2018

My Brain Loves Me

It's true. My brain loves me.
 
And at its very core, the responsibility of my brain is to keep me alive.
 
I try to distract it by remembering the words to every single Neil Diamond song. But my brain has more important things to do. It keeps my heart beating, my pancreas processing glucose, my eyes seeing the word, my temp at a 98.5.
 
My brain loves me.
 
It also loves routine and muscle memory. My brain tells my foot to step on the brake when it sees a red light. In my sleepy state, my brain tells my index finger where the snooze button is. It tells my voice to say hello when answering a phone.
 
47 years of this life, my brain and I are pretty connected.
 
I like to think of how my brain would react when tested. How it would process the perfect snarky comment, the best response in a meeting, the perfect reaction when being flipped off on I-25. But so many times this brain I love and that loves me lets me down. Maybe it's caught off guard; it didn't anticipate a middle finger in the exit lane or that really tough question in a meeting. My brain likes routine.
 
There is nothing routine about a traumatic situation. Our brain hates it. The amygdala hijacks all rational thought. We search for something routine, something we can relate to; in a traumatic situation, there is nothing. Our brain, whose purpose is to love us and keep that heart beating, makes decisions we would not usually make, we rage, we puke, we freeze, we faint.
 
Our brave, our first responders, our doctors, nurses, our military, spend their lives training to respond in these very worst situations. And sometimes even their brain has no place for a trauma. With Samantha, our interactions with medical teams involved input from us. Their brain needed a place to process and trauma offers no chance to process.
 
My point....and I do have one.....is that if your brain is lucky enough to not have a history of processing trauma, assuming heroic actions from your brain that loves you and just wants to protect you is silly. And disrespectful to your brain....your brain that loves you so.