News
Maja: Smiling Brightly Through the Early Years of WSS
On 25 June 2018, a beautiful little girl was born into this world. A petite little girl with a lot of dark brown hair and big almond shaped eyes. Maja.
Brynlee: Defining Rare as a WSS Warrior
Rare now describes every aspect of life for us. The hardships, feelings, pains, emotional turmoil with each new diagnosis, celebrations, milestones…All of it, rare.
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.
Millie’s Story: A Warrior’s Quest to Raise Awareness
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...
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...