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Mitochondrial Awareness Week 2020

Dear Friends, Family and Supporters of our Cause,

If you are receiving this email or reading this blog, website or tweet, its because you are engaged with us and for that we thank you.

Thank you.

This week marks International Mitochondrial Awareness Week. This week also marks ten years of Miracles for Mito as a nonprofit. Happy ten years to us! Today I was driving into Boulder from Denver. There is a point as you approach Boulder that you can see Long’s Peak, the Flatrions, Twin Peaks….it is really an amazing view.

I reflected on our ten years, Miracles for Mito’s mission to establish a presence in Colorado and felt a little teary. We have lived a lot of life in ten years. We have said goodbye to Littles we loved fiercely, we have raised over $1MM to the Mitochondrial Clinic at Childrens Hospital Colorado and we have established ourselves as a Mito presence on the Front Range.

There is still a lot of work to do. But in 2020, a year for the history books, we have raised $84,000 for our Mitochondrial Clinic at Anschutz campus. This significant, consistent funding has presented multiple opportunities for trials in 2021. The clinic is currently in negotiations for these trials.

In a Spring and Summer of lockdowns, Miracles for Mito shipped Ubiquinol and gift cards across the nation. We now have the bandwidth to ship supplements beyond the Front Range. Please let us know if you know a family that needs help, regardless of their location.

Shipping Supplements from Erie, CO!

And our amazing nurse MaryBeth Hollinger, provides coast to coast support for Mito families facing the challenge of a rare disease during a pandemic. The support group meetings she conducts twice a week are a cornerstone of support for so many.

Family grants, gift cards, a registered nurse facilitating support group calls, COQ10 for whomever needs it. Miracles for Mito is there for our families.

Is there more to be done? Always.

Do we need your help more than ever? Absolutely.

But just like climbing one of our 14’ers in Colorado, it is one foot in front of the other, every little step makes a difference; tenacity, perseverance with a touch of exhaustion will get us there.  

Thank you for all you do. Please follow us on Facebook and Instagram this week as we celebrate advocacy and awareness. Thank you for ten years. Let’s dare to dream where the next ten will take us: http://www.miraclesformito.org.

Yours for a Cure,

Heather and Maria

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Would We be as Good as we Were 19 Years Ago?

I was 30. Before I was married. Before my children. Before I knew the words Mitochondrial Disease.

At 30 I could give you a list of all my worries but looking back, I had a pretty charmed life.

I was consulting for KPMG and I was scheduled to start my new gig on September 11th in Liberty Corner, New Jersey. I flew into Newark the night before, cursed dark New Jersey roads…..why is it so woodsy here????? And reported to my new project at 8:50 on September 11th.

I sat in the lobby waiting for my new manager, sipping my Starbucks, and watching CNN. You know how the rest of the day went.

But it was different because it was close. Liberty Corner is a commuter town. People had loved ones in Tower One and Two. I watched the day unravel. I watched loved ones search for each other, unable to get through, worried and frantic.

At noon they told me I should go home and come back tomorrow. But I had no home. I had room 311 in a boutique hotel of quaint and tiny Liberty Corner. And so I sat and watched and cried and fretted.

I couldn’t fly home for ten days and so I embraced a very sad community. I went to church and prayed. I went to the coffee shop. A firemans boot sat on the counter to collect funds for families. I ate scones, drank lattes, cried some more and tossed dollars into the boot.

On Friday, I went into the city to find solace with dear friends. The subway line under the Towers had just opened. It smelled of burnt oil. Smoke still stood in the subway air. Grand Central was a living Memorial of those missing. I’ve experienced a lot of personal loss in my life. The image of poster after poster of missing loved ones is still crystal clear.

I vote Democrat. I always have. But I was so proud of our republican president. He was strong, uniting, compassionate. For as hard as it was to be so far away from family; I have always been honored to bear witness to the healing of that community.

2,977 souls were lost that day. 19 years later, we honor those lives.

Would we be as good today? As we approach almost 200,000 lives from a pandemic we refused to acknowledge for months, would we be as good? Would we blame each other? Would we turn? Would we unite?

I don’t know that we would unite in the way we did 19 years ago. I can give many examples why I think that but many of you know where I stand on current issues. To say my why would only increase the divide. You know. I know.

It took buildings crashing down for us to unite. 2,977 souls and the ripple in the world that their void left. But it also took empathetic, compassionate rhetoric to reinforce that our neighbor was not to blame, blue or red was not to blame…………It was 19 men following a leader who made it his life’s work to destroy what we believe in.

I traveled often after 911, for a while on a weekly basis. As I took off shoes, belts, endured countless, very ‘personal’ pat downs, I would think about what I heard often in the security line, “Well the terrorists already won.”

I never thought that. I always thought that we all were doing the very best we could to make sure we all got to our places, with our loves, as safely as possible.

I hope we can back there someday. That we all do our very best to make sure we get to our places, with our loves, as safely as possible.

It’s all any of us ever want.

Peace and blessings to you on this day.

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Homework

In March the world shut down.

Our trip to Europe was cancelled. Work trips were put on hold. Ski resorts were closed. We hunkered down and I continued to write in my gratitude journal.

“I am grateful.”

I am grateful for a job, a house, stability, my health, my husband…..the list…..I focused on the list.

And this worked for a while. I held my gratitude like a shield against all that was going on in the world.

But it didn’t get any better. In fact, it got worse. Politics got worse, the summer got worse, we got angry, divided, Spring turned into Summer. Summer turned into July.

Stupid July.

July was ugly. My gratitude shield was a puny piece of aluminium…..pew….pew….pew….

I called up my therapist- we hadn’t talked in a year.

“I am so sad. I feel so extended but I’m not. I live with one person, 24/7 and I love him but he’s loud and he farts…..a lot. I should be grateful for all I have but I’m so stinkin sad. I have lost friends. Everything I have held true seems to be false. I struggle. I should be more, I should be better, able to rise above the petty. I cannot.”

I waited for her to tell me I was broken. My pain was exaggerated and she could prescribe something to fix me.

Because we live in a world where we have an instant solution for what causes us pain; a pill, blame, rage….But instead she said to me, “With everything going on, everything. If you aren’t a little depressed about these events, you might not be in touch with what is going on in the world.”

Thank you…..thank you lovely therapist for this acknowledgment; that maybe it is the world that is broken and not me.

I talked to her today. “I am joy starved,” I said. Not just a laugh or a moment but a full on group Powow WAAAAHHOOOOO joy.

“I miss it.”

“What makes you happy?” she asked, “even for a moment?”

“This,” I said, “talking to you, swimming, yoga, moments with friends, reading, slow mornings with Hubs.”

“Your homework,” she smiled, “your homework is to remember these small moments. Take a second or two, remember the air, the smells, how you felt. Remember these moments. Hold them for a precious second and then move on. We can be enveloped in the bad. Hold the good.”

We are all trying.

Trying so hard.

I don’t think things will get easier. I think the next couple months will be very challenging. I invite you all to share what is good. Hold it in just a second longer. We are there….I am rooting for you….I am rooting for me….we are all rooting for us all.

This is not our life. This is just our life right now.

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It is what it is.

I used to be a tad more open minded to other opinions.

I still try to be but I find it harder.

And if you find me difficult and unrelatable, I get it. It’s not you. Really, it’s not you. It’s me.

And perhaps it’s the company I keep. Nothing is worse than a tribe of special needs parents reminding you that health is important, wearing a mask is important….nothing ruins your mojo more than special needs parents who have to run home to oxygen, suctioning, feeding tubes and bottles of purel. Special needs parents are not very sexy.

And bereaved parents?

Get. Out. Of. Town.

Never, ever talk statistics about how many children could die of COVID to a bereaved parent. To a bereaved parent, we beat the odds. Anything can happen. Don’t try to rationalize life and death based on what you saw on Fox News; especially if its not yours.

When was the last time you attended a funeral and sat in front of a baby casket? Never?

Then count yourself lucky and STFP.

Am I angry? Hell yeah.

Stop talking about things you think you know and I hope you never ever know.

But really. It’s not you. It’s me.

Of course I seem scared to you. My stories are your worst nightmare. The outlier to your statistics.

But I am not scared.

I was scared when my daughter seized for the first time. After the 20th time, it was old hat.

Cause it is what is it is.

I was scared when she caught MRSA multiple times and it took two weeks to get a bacterial infection under control. I was scared when I was sent home with two IV antibiotics to be administered two hours around the clock through her PIC line.

I was scared when I performed CPR for the first time. I hope I never have to perform it again.

But hey.

It is what it is.

160,000 dead in five months. But its not your Mother, your Father, your Brother, your Child.

Is it?

So you can ignore it.

It is what it is.

Until it’s yours.

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Happy 30 Years American Disabilities Act

I missed a birthday yesterday. It’s an important one so I will send a cake.

30 years ago the American Disabilities Act was passed. 30 years ago a law was created stating that you could not discriminate against those who had epilepsy, you could not refuse to serve someone in a wheel chair, you could not deny employment to someone because they had a hearing aid.

What is crazy to me is that before 1990 you could.

I was 19 in 1990. Selfishly, I cannot say I remember this historic date. And as a somewhat blue leaning voter…….I say thank you George H.W Bush. Good-on-ya.

This was the Capital Crawl on March 13, 1990. They could not walk, so they climbed up the Capital stairs.

Crawled. Because their legs did not work. And because their legs did not work, they faced discrimination……only 30 years ago.

Crawled. Because there was no other way up.

Four months later, Bush signed the ADA act, a bill written by Tony Coelho, a California Democrat who suffered a head injury at 16 that evolved into Epilepsy. In college, when he wanted to become a priest, he was told he could not because according to Canon Law, people with Epilepsy were possessed by the Devil.

This was in 1960. Apparently 60 years ago you could still be possessed by the devil.

30 years ago, I had no idea the impact this law would make on my life. I will always be grateful for ramps, accessible buildings, wide doors, individualized services vs institutionalization, access to education……my ADA friends are nodding their head and saying ‘yes…..but we have such a long way to go’

As a mama who changed her daughter on the floor of a non ADA accessible bathroom, yes, this is just the tip of the iceberg.

You can have 1,000 ramps but you cannot change attitudes…..or those who still park in handicapped spots 😦 And today, in hearing a Westminster Colorado teacher refer to his special needs students as ‘retarded’, yes we have a long way to go.

And it goes without saying that those in undeserved communities struggle for these ADA rights more than anyone.

But despite the work that needs to be done, despite partisan conflicts over funding and the fight that parents face every year, with every IEP, there was once upon a time when we all came together and did good.

It wasn’t that long ago.

And it should be celebrated…..

Happy Birthday American Disabilities Act. Thank you for paving the way.