Life With WSS
By: Charlotte Bedford, United Kingdom Millie was born in 2010, after a normal pregnancy and birth. It soon became apparent that Millie wasn't gaining the weight, and we were given the diagnosis of "Failure to Thrive". Months of high calorie milk and tests...read more
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...read more
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...read more
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...read more
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...read more
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.read more
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!
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.read more
Alison is a remarkable woman. She is actively involved in the WSS community and has made herself available for countless questions from parents of children with WSS.read more
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...read more