UMDF Connect Patient Spotlight – June 20192019-06-20T14:52:28+00:00

Hayley Leib

Four Months — Many Miles for Mito!

 

For many runners, one major marathon or trail race is a once in a lifetime event.  Michael and Amy Hall are not just any runners.  This year, Michael’s doing three mountain trail races – all in a matter of four months.  Amy is also took to the trails with Michael in a race in early June. The Boulder, CO, couple will participate in a 12-miler, a 50K, a 100K, and a 100-mile mountain run before the middle of September.    It’s hard work that requires dedication and training. On top of an already challenging schedule of work and taking care of their daughter, Nina, the couple’s running is a nearly daily commitment with each of their weekly running schedules totaling five to ten or more hours. While mountain trail running is not new to the couple, this time they are putting their mitochondria to the test to power them through in honor of their daughter, “Unstoppable Nina”, whose mitochondria (which many take for granted) are not functioning normally.

Nina, has Leigh Syndrome, which is a form of mitochondrial disease.   Initial symptoms can include the loss of basic skills such as head control, walking and talking. Patients with Leigh Syndrome may also have other problems such as irritability, loss of appetite, and seizures. There may be periods of sharp decline or temporary restoration of some functions. Eventually, the child may also have heart, kidney, vision, and breathing complications. The prognosis is usually poor, but Nina has already been beating the odds.

“We were handed this terrible situation with Nina, so we wanted to do something to raise awareness and funds for research,” Michael said.  In his own words, Michael is “always look for something fun and crazy to do.”  The team’s first race, the Golden Gate Dirty 30, was scheduled for June 1st

Michael will then embark on two additional races, of increasing difficulty this summer. His second race, the Never Summer 100k, is slated for July 27th requiring a total of 13,000’ of climbing at an average altitude of 10,220’. Michael will finish his trifecta with the Run Rabbit Run 100 miler on September 13th.   The last race will be very difficult, requiring a hard-earned 20,390’ of climbing.   In each one, Michael will be running at high altitudes with substantial temperature changes that can also play havoc with a runner’s body and breathing.  “This last race starts in the morning and continues overnight and will likely take over 24 hours to complete.  There is always the possibility of running into animals like bear, mountain lions, and moose”.

Michael hopes his mountain trail runs during the summer months will not only raise awareness about mitochondrial disease and how it affects Nina, but also that fact that healthy people often forget that they need their mitochondria to see, hear, breathe and run.  “Nina faces challenges every day.  I wanted to honor Nina by pushing myself with something I love to do and the things she can’t.” 

In an effort to raise awareness for Leigh Syndrome and mitochondrial disease, the Hall family will sell merchandise and are asking those interested to donate “The Unstoppable Nina Hall Research Fund”.

 

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