Mitochondria, which live in our cells, create the energy our bodies need to function properly. If mitochondria do not work, our organs become compromised. In worst case scenarios, the heart, lungs and brain begin to fail.
Mitochondrial disease is largely an inherited genetic condition. It is very rare (up to 4,000 children in the U.S. are affected each year) and also difficult to diagnose since symptoms present differently from one individual to the next. Depending on the severity of the disease, treatment can mitigate some of the effects, but ultimately there is no cure.
For more information visit the United Mitochondrial Disease Foundation.
I first met Kristelle and Evan on January 25, 2017. Through introductions and conversation, we quickly found out that we had worked with some of the same people in the past. Kristelle and I had unknowingly worked in the same cardiac surgical step down unit at different times in our careers as RNs. Evan and I had worked with the same cardiac surgeons. In fact, working at the same hospital is how these two met and eventually married.
The three of us slowly built a rapport over the next few weeks, and we discovered together that their baby Noah, born December 29, 2016, was suffering from a very rare mitochondrial disease.
I watched Kristelle and Evan struggle with the unpredictability of his condition, and I struggled to help them cope with the difficulties they faced day to day. Their experience with Noah and his disease is best put in their own words:
"Like a never-ending nightmare, Noah battled around the clock — each day came with highest of highs, and lowest of lows. Unable to breathe on his own, Noah required the support of a ventilator. He fed through a feeding tube and had blood drawn several times per day. Progression of the disease led to hypotonia (low muscle tone) and an inability to move his arms or legs.
But through it all, Noah never stopped smiling. His eyes would draw you in from across the room, spreading his love infectiously to all who saw him. Nurses, doctors, housekeepers, respiratory therapists all formed an eternal bond with our Noah — each of whom could always be found in Noah's room "partying" the night away — reading him books, playing peekaboo, and dancing with him to his favorite songs. Despite his failing body, he maintained the playful mindset of a three month old baby — hopeful for a future outside of the NICU walls."
I encourage you to read the entirety of their story here
. Baby Noah influenced many lives outside of the NICU walls — including that of my husband's, who followed Noah's journey as well.
In an effort to bring awareness to mitochondrial disease, my husband and I have decided to tackle a trio of races. Just as mito run our bodies, we will #runformito
Kristelle and Evan have established a fund in Noah's name through the United Mitochondrial Disease Foundation. I have made it a personal goal for us to reach $12,517
- the date I first met baby Noah.
In hearing this story, I hope we have inspired you to join our mission in raising awareness about this disease. All donations will directly support mitochondrial disease research. I encourage you to share this page or use the hashtag #runformito on social media platforms!
For any inquiries, please reach us at firstname.lastname@example.org