Thursday, June 12, 2014

The Inspirational, Devesational, Heartwarming, Heartbreaking, Mitochondrial Conference

Last weekend found me in Pittsburgh- which was surprisingly quite lovely. I was there with my Mito Crew for the Annual Mitochondrial Conference. 

And Colorado had a presence! We had t-shirts, and a booth and chocolate and a video. 



It is good to have a presence…and a t-shirt….and a voice. This is a tough, tough disease with so much loss and so little awareness. The last two years I have come back from this conference thinking ‘My Good God, this disease sucks my big toe.’ 

It really sucks more than that but I try to keep my blog PG. 

That is not to say I am not positive nor I am bitter. I find myself incredibly impressed at the work, the tenacity and the camaraderie of this amazing group.

On Thursday we met this beautiful boy, Samuel.


Well, actually we met his mom first. Us Coloradans entered the Sheraton Premier Lounge (that’s right….I got status) lookin’ for a glass of wine and met Samuel’s mom on the way.

Samuel has a form of Mito called Leigh’s disease. His brother did too….Samuel lost his brother a couple years ago. His mom told his story and we greeted each other the way all Moms do who have lost their babies….a way of knowing….a saying of ‘I’m sorry’ but we are both sorry. And we are both happy to find another parent who is living on planet Earth but also on planet My Baby Died. It is a rare, sad, complicated, beautiful intimate bond.

And isn't Samuel and that infectious smile beautiful. 

We set up our booth next to MitoCanada…cause that’s how we roll….international and all. The Director lost her little girl the same year we lost Samantha and is now diagnosed with Mito herself. Again, that bond….I showed her how much I adored her by snagging ALL of her MitoCanada swag.

And I know how sad this must sound to those reading this. But to us who live this life, we are so relieved to find others who live this same life…..and who find hope and who find love and who cry and who carry on the legacy of their child.

We reconnected with our many amazing, dedicated, funny, smart doctors along the way. Our own Johan VanHove made the trip. We had dinner with Dr. Saneto and I harassed Dr. Bruce Cohen to come and sit with us. To listen to Dr. Cohen and Dr. VanHove talk about Mito tests, results….my goodness….they too live on planet earth but also on planet…I am a Mitochondrial Doctor and too stinkin smart for this world.

I think it takes a lot of guts to be a doctor of a disease this complex and this devastating.




I left Pittsburgh happy and sad, hopeful and wanting. And knowing I will always have a place in this wonderful, intelligent, complex community. 

And knowing our little community is making a difference. 


And that in the end- it is good to be home! 

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