Beth Popa Castelvetere, diagnosed in January of 2013 at age 36.

I am 38 years old, and I was diagnosed with ALS in January of 2013. What started out as a lack of balance in my infamous “high heels” and slight dropping of left toes while walking and running toward late 2011, turned into a tragic diagnosis. Not only for me, but for my husband, family, close friends and mostly my now-14-year-old son.  I could list every way ALS has affected me physically, emotionally, mentally and even financially, but all of those seem trivial compared to being a mother with ALS, and my son perhaps losing his mother far earlier then any of us have planned.

His loss is so much greater than any of mine.  He is witnessing his ”mommy” become trapped inside a body that is dying, becoming unrecognizable.  Our bond and love are perfect, which means part of him is dying, too. My heart burns with tears for the losses and stolen moments he will incur.  For my husband, who will lose his partner, the only other one with whom he can relive each moment of our son’s life. Gone.  No treatment, no cure for this horrific disease.  How we will die and what our children and loved ones will witness, inhumane. My hope is more awareness is brought to ALS, more people don’t just talk but they DO, so other sons and daughters don’t lose either of their parents in this devastating manner.

Our family chooses to live each day with greater love and stronger hope.  Viewing life in a way most never can imagine. We live to inspire. The true face of ALS in my story? My son.

ALS (Always Love Strong)