Our Stories

WSS Warrior Spotlight: Spencer

Meet Spencer from the United Kingdom.

His mother, Leanne, shares his journey beginning with her pregnancy and then navigating many WSS symptoms during the early years of his life. At seven years old, Spencer continues to knock down the challenges as he encounters them in his path and is growing into his big personality.

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Briar Rose’s Journey: A Message of Hope and Support

flight.  Therapies for feeding, development and speech.  Then add in the equipment.  A g-tube in her belly and a feeding pump to deliver nutrition to her body that just won’t grow. Daily injections.  An oxygen tank, a nebulizer, monitors, to help us keep her breathing.  Wires and tubes, alarms and beeps.  This is the life of the rare.  Those with rare diseases. 

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Aniston: My Rare Girl

Aniston was diagnosed with Wiedemann-Steiner Syndrome at 14 months. During the first 6 months of her life, she cried for 20 hours a day and didn’t sleep. Growth was horrible and eating was a nightmare. Aniston continues to attend speech, OT, and now ABA (applied behavioral analysis) therapy. We always worry if we are doing enough to help her reach her potential.

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Remi – Our Strongest Little Girl

We never expected to find out that our daughter had a very rare genetic condition. But does anyone? There’s nothing that truly prepares you for that moment. All of the doctor visits, the procedures that had to happen, the endless amount of time spent googling her “symptoms”, none of it prepares you for hearing the words: “Your daughter has Wiedemann-Steiner Syndrome.

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L’histoire de Robin: un petit guerrier

by Cecile Garaud Robin est un petit guerrier, je l'ai su dès que le test a viré au bleu.  Une conviction qui s'est affirmée tout au long de cette grossesse qui a pris la forme d'un marathon, d'un parcours d'obstacles que l'on a franchi avec courage, un mois après...

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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

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

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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First Grant Awarded

Our first grant, in the amount of $200,000 has been awarded to Dr. Hans Bjornsson of the University of Iceland. Dr. Bjornsson’s project, Creation of a Specialized WSS Mouse Model to Establish Postnatal Malleability of the Neurological Phenotype in WSS, will take place over the next two years.

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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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Interview with a WSS warrior Mom

Interview with a WSS warrior Mom – Shannon Gray answers some frequently asked questions.
Shannon and her family live in Bristol, Rhode Island. Her 4 year old daughter Emma is a super hero, firefighter, princess and WSS Warrior!

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Dylan’s Story

The moment Dylan was born, his dad Jacob knew something wasn’t right.  A few minutes later Dylan needed intubation and spent his first hours in the NICU.

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WSS Foundation Store!

The WSS Foundation is pleased to offer a variety of logo imprinted items to help spread awareness for the foundation and to show our community's strength.  The WSS Foundation will receive a percentage of every item purchased.  We hope you enjoy the items we've...

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Exciting WSS Study in Italy!

If you are interested in participating in the study being completed by Dr. Livia Garavelli in Italy on C-2/C-3 vertebrae fusion in WSS patients, please download the 4 files below (instructions, purpose of the study, a medical history, and consent). Dr. Garavelli also...

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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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