BENEFITING: Muscular Dystrophy Association
EVENT DATE: Jul 31, 2016
Abel Alejandrino wrote -
A father is supposed to be able to protect his daughter from all harm and danger. In my case, I felt hopeless in 2014 when my daughter Ava was diagnosed with nemaline myopathy, a genetic muscle disorder that causes severe muscle weakness and fatigue,. The specific type of nemaline myopathy that she has is rare, being only the 20th reported case in the US and she is one of the youngest living cases diagnosed. She is somewhat of a guinea pig being a first for most of the providers she's seeing. Nonethelless, she is getting great care through the MDA clinic of Lucille Packard Children's Hospital at Stanford as well as with California Children Services. Ava is such a soldiier and is always good spirited. She knows she has special muscles and never complains about it. Her condition is permanent so that's tough for me to swallow. And it will progressively get worse as she gets older. Although ambulatory, those individuals affected by this condition are not able to run by their adulthood. So what is a father to do? I pray for Ava, I hug and kiss Ava, I help Ava be as self-sufficient as possible.
And now I run for MDA (Muscular Dystrophy Association) and in honor of MDA (My Daughter Ava). Every time I feel that I'm too tired to run or want to quit, I tell myself that there are people like my daughter who can't or have trouble running...and that God has blessed me with this avenue to provide awareness and inspire others.
I have been running since 2012, and I am taking this opportunity to challenge myself in 2016 by starting my campaign and 'Run for MDA'. I will run everyday for at least 1 mile/day and at least 100 miles/month. Though I'm blessed with overall good health and am pretty active, I've never done anything like this before, so I appreciate everyone's support and encouragement along the way.
Oh yeah, besides this daily 2016 challenge, I will be running the San Francisco 52.4 mile Ultramarathon on July 31st and raising money for MDA (Muscular Dystorphy Association) while trying to bring sMILEs to MDA (My Daughter Ava).