One more national mitochondrial disease conference has come
and passed. Every conference brings something special, something new, something
familiar, and lots of new energy, hope, emotions and love. There are a few more
clinical trials to report results from every year. Gradual steps towards a cure.
Like with most things in life, it’s the people who make a
difference. For every year we go, we know more and more familiar faces. Every
year we make new friends. We also brought our own beautiful group from
Colorado.
Judi, Heather & myself.
Running Miracles for Mito is a fluid process. The work is
part of each day in one shape or form. There are moments where I am wondering
how we can do it all and at the same time caring for a very medically complex
Mito child. The last couple of days confirm
we’re doing something really great. Something many people around the country
are trying to do. The fact that we’re
the only support group in the country represented at the national level must
mean we’re doing something right. The fact that NIH and NAMDC are both telling
us that if each Mito Clinic had the support we give our families and Clinic, we
would be so much further in terms of research and clinical work makes it all
worth it. By the end of the day, it’s never ever recognition that is the
driver. The simple truth is that this is what we do. It’s hard to imagine life
without Miracles for Mito.
This year's exhibitors
Our Miracles for Mito booth was really busy this year. We
ran out of chocolate and candy on the first day. We wish we would have brought
our t-shirts because they would have all been gone. There is always that one
family that sticks with me. This year, I got to meet a Norwegian medical
refugee family. The family went to Washington DC for a week’s vacation. Little
did they know that their son had Leigh’s disease. During his vacation, he had nine
(!) mitochondrial strokes and ended up in the hospital for five long months.
The family lived in the hospital with their suitcases as their son was fighting
for his life. Two years later, they are still living in Washington DC. Their
son is too sick to get on a plane to Norway. His only chance of survival was
for the family to stay put in Washington DC. They had to beg the Norwegian
government to move the dad’s job to DC, so they could continue a life as
medical refugees far away from home. This hit close to home knowing what a
cultural difference it is between Scandinavia and the US. It also sort of
exemplifies the Mito monster. You just never know when a Mito kid will crash
and get so very sick.
My favorite part of the conference is doctors and parents
interacting throughout the whole conference. We all share the passion of Mito.
Our own Belgium Mito doc finds us at every lunch and dinner.
Colorado crew and our Belgium doctor
Happy hour with NIH and MitoAction
I always make sure
to talk to my dear Mito neurologist out of Seattle. I met him the first time at
the UMDF Symposium in 2008. I knew he was good the first time I heard him talk.
After his speech, parents lined up outside the meeting room to get answers to
their questions. I did the same because I had a million and one questions. I
remember telling him about Jacob’s irregular heart rate while sleeping, and him
telling me my son had to be seen by a cardiologist and what specific tests
should be ordered for Jacob. It was a sense of urgency I hadn’t received from
any other doctor when it came to Jacob’s heart. Hours later, another Mito mom
and I were heading back to the airport. Dr. Saneto was also waiting for a cab. He
promised to share a cab with us as long as we didn’t ask any medical questions.
Of course the whole way to the airport was about our kids.
Our own parent Sebastien Cotte and Dr. Saneto did a fabulous job presenting about medical marijuana and its' benefits to mitochondrial disease.
Fast forward five years, and I sat across him in California
for my second UMDF Symposium. He said: “we shared a cab together, didn’t we?
Your son is seen by Dr. C. How is he doing?” He challenged the seizure
medications Jacob was on, and gave me advice on what cards I could play with.
He wasn’t comfortable with me trying medical marijuana for Jacob’s seizures
that year. Last year, he left me with the to-do to research medical marijuana
and specifically CBD for my son. Charlotte’s web (
http://www.cnn.com/2013/08/07/health/charlotte-child-medical-marijuana/)
was something we all wanted for our kids by then. He told me specifically what
labs we had to run and monitor, since one of Jacob’s current seizure
medications can interfere with CBD. It took us about half a year to get our act
together between getting Jacob’s red card, get off the wait list to access Charlotte’s
web, and to find a time when Jacob was stable enough. We were in awe how his
myoclonus almost completely disappeared within a few days. Unfortunately,
Jacob’s first attempt with CBD was short lived. We stopped it after 5 days due
to Jacob being septic and possibly having pancreatitis. We were told CBD could
cause the inflammation of his pancreas. After confirming there was no link
between Jacob’s increased lipase and CBD, we started it up again this spring. His
pancreas is fine, his myoclonus is almost gone once again. I can hold Jacob’s
hand and not feel it shaking all the time. But Jacob’s labs are out of whack.
The one seizure medication is interfering with CBD. Today, I once again sat
across the table from Dr. Saneto. We reviewed Jacob’s labs and we once again
have a plan in place. We will communicate via email and run labs via
Children’s. This is priceless. I can’t travel with Jacob across the country to
meet with Mito specialists. This conference has given me the opportunity to get
top notch medical advice specifically for Jacob. It’s simply priceless.
The flight home was disastrous. I don’t know how many times
we were supposed to take off, and instead we ended up in a storm watch! We
ended up sitting in the plane for nine long hours…It was plenty of time to talk
Miracles for Mito and plan out what’s coming next. Stay tuned!
Judi and I wanting to come home!
To Miracles! Love, Maria.
