Wednesday, July 30, 2014


Months of bike training and a second Courage Classic ride benefiting Children's Hospital and more specifically the Mitochondrial Clinic have come and gone. Spring and summer have been a whirlwind, but I do think it is worth stopping and pausing for a moment about this special and personal bike ride.

Bike training was both easier and harder this year. It was easier because I knew a little bit more about riding a road bike. I didn't start out the season by having a big fall into a flower bed making me bruise my knees and legs. I instead started out by getting myself a carbon road bike! I am in love with my new bike. It is definitely a smoother ride, even if I do miss my old granny gear when I am going up steep climbs.

I knew where to ride this year. I knew where to get my legs ready for steep hill climbing. I knew how to fuel as I was riding. I completed my first Century (100 miles) ride this June, which I am proud of.

My girl's life is changing as she is growing up. Her social calendar is simply something else. Many times I had to be back home by a certain time to take her somewhere or simply not biking because she had a full day of activities! That made it hard to plan longer bike rides this year.

I also was very sleep deprived towards the end of my bike training. Our night nurse Libby left, and Joakim and I took turn sleeping with Jacob. Jacob definitely knew his night friend had left, and simply decided to stay up for whole nights as we were watching over him instead of Libby. Going up Flagstaff in Boulder on no sleep is simply no joke!

I was on the phone with GI in Evergreen discussing Jacob's stool. I was texting Dr. C. about seizures as soon as I had cell phone coverage coming down the mountain. I had to call a dear friend from Boulder the minute I got off my bike realizing nurse Gemma needed help to adminster Jacob's seizure med, and I just wouldn't make it home in time. We had two hospital stays during my bike training. Jacob's medical life has been busy lately.

And then the Courage Classic happens, and it is not about you and your bike anymore. It is about the children. It is about Jacob. It is about his Mito friends. It is about honoring Samantha, and cherishing all the good things coming out of this little girl's life. It is about this hospital we can't live without. It is about turning this devastating disease into something beautiful and something much bigger than life itself. It is about finding happiness and joy, and nurturing friendships.

Right after Courage Classic, Summits for Samantha reached our fundraising goal of $100,000. Yep, that just happened...Two days after Courage Classic, Jacob was seen in the Mito Clinic. We signed consent to have Jacob be enrolled in the NAMDC (North American Mitochondrial Disease Consortium) database. By being an enrolled patient in NAMDC, Mito doctors all over the country can find the right patients for their clinical trials. We also found out that Jacob's gene will be sequenced in the diagnostic machine "Oxygraph" to further research Jacob's specific Mitochondrial disease. None of these things would be possible without Summits for Samantha. None! By riding over multiple mountain passes, we are keeping the Mitochondrial research alive and moving forward here in Denver. In the middle of sleep deprivation, adrenaline insufficiency and seizures - I simply can't find a better reason than that to ride.

Thanks for everyone's enormous generosity.

Til next year,

Love, Maria.

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