Profiling SMARD: Silas’ Story

** Silas is the son of Lisa, who has been working so hard to get us connected with the Jackson Laboratory!**

 

Silas Werner baffled a small army of Pittsburgh pediatric specialists before he was diagnosed with SMARD (spinal muscular atrophy with respiratory distress) three months after his birth. His parents, Lisa and John, were devastated.
The horrifying news of Silas’ diagnosis came after the death of their first child, Valentia, who died one year earlier at age six weeks. The medical examiner listed the cause as sudden infant death syndrome, despite the absence of risk factors. When Silas was later diagnosed with SMARD, his sister’s death was further investigated and it was confirmed that Valentia—the Latin term for “strong and brave” also had SMARD.
After being assured that SIDS never happens twice within the same family, Lisa took on the challenges of another pregnancy. Silas was born just after Christmas in 2009, at a low birth weight just like his sister, only four pounds eleven ounces. Lisa says she intuitively knew then that she and John faced enduring another “nightmare.”
“Our daughter died in our house, and I lived in constant fear that I would walk into his room and Silas would be dead, too.” Lisa and John, never convinced that Valentia died of SIDS, enrolled Silas in a voluntary sleep study. This miraculous decision saved his life, as he was intubated and rescued when his breathing stopped during the study.
Early into five months of tests, doctors had ruled out SMARD. They eventually diagnosed botulism, assuring the couple that, with the right medications, he would make a complete recovery. He didn’t. Eventually, testing showed SMARD should not have been ruled out.
“We liked the named Silas because in Latin it means from the forest, and we felt like expecting him was the only thing that could pull us out of the forest of grief after losing our daughter,” says Lisa. “Meanwhile, he was the messenger who led us out of the forest of unknown.”
Living against all odds, Silas, now almost two years old, requires round-the-clock care supplied by visiting nurses and his parents who mastered “special needs boot camp.” Despite his condition, Silas radiates joy from his smile and happy facial gestures. John, Lisa and his nurses describe Silas as “having the sweetest disposition of any baby we’ve ever met.” Speaking haltingly through a ventilator, he’s now mastered “mama” and “papa,” much to the delight of Lisa and John.
Despite not being able to breathe on his own and not being able to use his arms and legs because of muscle weakness, Silas is like any other child. He loves music and especially the show Glee. He smiles and likes to watch the wind blow through the trees. And he loves to snuggle in bed with his parents. “Silas makes life rich,” they say.

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2 Comments

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2 responses to “Profiling SMARD: Silas’ Story

  1. peggy thomas

    I have a grandson who was diognosed at 7 weeks WITH sMARD, he is still in the Hospital now at 6 months . Today he and I watch Bambi his first cartoon movie. He is a joy to us all. I beleive there have been many babies lost to SMARD and parents have been told SIDS. Logan could have been one of them .I wish some one could get the word out to all those greiving parents who have lost a child to SIDS they could be tested to see if the are carriers of SMARD.

  2. lidia

    silas is such a brave little cutie pie,sarha and john are so strong and are true insperations to me.
    i think all of us have alot to thank them for,pure dedication and strenth to help raise awarness and hopfully find a cure.

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