2016 Run for MDA (My Daughter Ava)
Organized by: Abel Alejandrino
The SF Half Marathon
August 13, 2018
EVENT DATE Dec 31, 2016
A father is supposed to be able to protect his daughter from all harm and danger. In my case, I felt defeated 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. It's been a tough road thus far especially for Ava since she just entered kindergarden when she was diagnosed. She is somewhat of a guinea pig and a prize patient, being a first for most of the providers she's seeing. Nonetheless, she is getting extraordinary care through the MDA clinic of Lucille Packard Children's Hospital at Stanford as well as with California Children Services. Ava is always good spirited even with all of her appointments and clinics. She knows she has special muscles and never complains about it. Also, I am so grateful that she has such a superb support system at her school.
Ava's 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 active and 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 have trouble with or can't run...and that God has blessed me with this platform 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 to '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 have always been pretty active, I've never done anything like this before, so I appreciate everyone's support and encouragement along the way.
Also, I have joined the official MDA race team, Team Momentum, and will be running 4 full marathons with them this year – Colfax on May 15th, San Diego on June 5th, Chicago on October 9th, and Dallas on December 11th.
Oh yeah, besides my daily 2016 challenge and the races with MDA Team Momentum, I will be running the San Francisco 52.4 mile Ultramarathon on July 31st.
On this journey, my goal is to raise awareness and money for MDA (Muscular Dystrophy Association) while bringing sMILEs to MDA (My Daughter Ava).
Thanks for taking the time to read my daughter's story and following our journey.
Please stay updated via my 'Run for MDA' Facebook page at: https://www.facebook.com/RunForAva
#RunForMDA #sMILEs #MDATeamMomentum #ConcreteRunners #MIPWorldwide #TeamSFOG