Life With WSS

Logan’s Story: From his Proud Mother

Logan’s Story: From his Proud Mother

By: Julie Hill Rare is proud, rare is strong, and this is our story so far… After many years of IVF, we had our first-born Isaac, who was born 13 weeks premature.  But still I longed for another baby. We lost a baby in between and around the due date of this...

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Olivia’s Story: A Journey of 35 Years

Olivia’s Story: A Journey of 35 Years

By: Maree Grover, Australia  Our daughter Olivia is the fifth in our family of five children and was born in June 1985. She was a smaller baby than her siblings and I had been very unwell for all of that pregnancy. Olivia was a breastfed baby until about 8 months...

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Brandon’s Story: Rare is Strong

Brandon’s Story: Rare is Strong

The following is a story about the strength of Brandon from Pennsylvania, USA in his mother’s words:  Brandon is our 17-year-old WSS Warrior and is the true definition of “Rare is STRONG.”   We received Brandon's WSS diagnosis in 2017, so a little later...

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Mommy Guilt

Moms are no strangers to feelings of guilt.  I’m pretty sure we invented it. Mothers of children with special needs experience guilt in epic proportions.  It’s impressive, really, how quickly we can turn every bad situation back around on ourselves.

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Gus’ Story: Our Search For Answers

By: Candace, mother of Gus (age 3) Gus was diagnosed with Wiedemann-Steiner syndrome in July 2017, just shy of his 3rd birthday. Here is our story... "Please don't shoot the messenger, but...can we talk?" I will never forget this day. Gus was 8 months old, and I had...

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