Silas Rhett Werner

Silas Rhett Werner, a soul like no other, departed from us on April 29th during what appeared to be a routine hospital stay, where he was tragically affected by a medication that proved fatal.

Born on December 28, 2009, Silas brought joy and love into the lives of his parents, Lisa and John.  For three months he stumped a team of Pittsburgh pediatric specialists, when he stopped breathing, at a sleep study, before being diagnosed with SMARD (spinal muscular atrophy with respiratory distress). Although the diagnosis was devastating, Lisa and John were resolute in their determination not to let it define him. 

Silas, affectionately known at times as 'Smile-is,' had a radiant smile that could illuminate even the darkest of nights, a light he shared generously and often. He would especially light up with smiles when his little sister read to him, played games with him, or when she played the piano. 

Despite relying  on a ventilator to breathe, Silas exuded innocence and tenderness with every breath. He was a remarkable teacher, no words were necessary, to show all who knew him the value of every second and how to cherish the gift of the present. 

Above all, Silas was content and cherished, fulfilling every parent's greatest wish for their child. He enjoyed the casual conversations of family and friends, and cherished the fact that his room was often the hub of social activity. As long as visitors refrained from interrupting his beloved movies such as E.T., Moana, Sing, Trolls, and Home Alone (which he enjoyed watching throughout the year), and the show, Glee.

When Silas was diagnosed, there were barely any researchers dedicated to finding a cure for SMARD. However, two researchers were inspired by Silas' joyful spirit and fearlessness, and demonstrated a genuine dedication to creating a  gene therapy drug to cure SMARD. Since then, thanks to Silas, a gene therapy has been developed. Although it has not yet proven effective, Silas was a driving force behind these ongoing efforts.

There will be a void in the heart of everyone whose lives were touched by Silas. He will be especially missed by his mom, dad, sister, and grandparents. He is survived by his mother, Lisa Porter Werner, father, John D. Werner, sister, Amalita, of the City of Pittsburgh, maternal grandmother, Karen Porter, paternal grandparents, Bernie and Suzanne Werner, and several aunts, uncles, many cousins and countless friends. Predeceased by his older sister, Valentia, and maternal grandfather, William “Bill” Porter. A mass was held on May 8th at Sacred Heat Church, in Shadyside, led by Fr. Brendan Dawson, followed by a celebration of life at Square Cafe. Memorial contributions, in Silas’ name, may be made to  Sacred Heart Elementary School, 325 Emerson Street Pittsburgh, PA 15206. Arrangements by John A. Freyvogel, Inc. (freyvogelfuneralhome.com)

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