Benjamin was about 3 months old when he had his first seizure (that we know of), he was sent to sick kids hospital in Toronto… Continue reading Benjamin’s journey with RHOBTB2
Results for "light up for rare"
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Hello everyone! My name is Rachele, I am 23 years old and I’m from Italy. As part of the rare disease day awareness campaign, I’d… Continue reading Più unica che rara
Before you read any of this, I want you to know that we give all the glory to God. He has been faithful in our… Continue reading We serve a MIRACULOUS God!
Not too long after the birth of my son in August 2017, I’d tried to get back into the swing of my old lifestyle. I… Continue reading Something wasn’t right – my lifestyle didn’t warrant the huge weight gain.
Im sure you laughed when you read the title but yeah I call it that because just like a ghost my this disease keeps appearing… Continue reading My motherhood battle with a ghost disease
It is with a heavy heart that I share the story of my beloved mother, Samia, a woman of grace and strength who touched our… Continue reading Honoring the Unforgettable: A Tribute to My Beautiful Mother, Samia
I could lie and say Gideon started his life as an easy baby, but I will not. Gideon started his life with a BANG. He… Continue reading Gideon, The Little Warrior
We knew something wasn’t quite right after having 10 pregnancies and 8 births (one born sleeping). You kind of have the upper hand in knowing… Continue reading Whitematter Warrior Dude Sutton
My name is Sachin and I’m a 37-year-old guy who has a rare genetic disease known as Duchenne muscular dystrophy (DMD), which primarily affects males,… Continue reading Sachin: Resilience in the face of Duchenne Muscular Dystrophy