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My name is Marie-Eve. I’m the mother of 3 boys, Milan (17), Nando (14), and Kirill (12). In early 2021, I’d been noticing marks on my oldest son’s body — undeniably and inexplicably large bruises — as big as full moons. My mind would spin in a million different directions, trying to convince myself nothing was amiss. Milan kept telling me he was fine. “I’m okay, mom. Stop worrying.” Then, one morning, he left for the hockey rink, sopping up blood from his nose and gums, for no apparent reason. It was March 11, 2021.

In Sept 2021, I had my stillborn son, Nolan. My blood count levels at that time were normal (250 platelets,

Most of my working life was associated with the printing industry. I was apprenticed to printing way back in 1962. I then worked as a printer and later as a teacher in vocational education at the School of Printing and Graphic Arts in Sydney, Australia. Over a period of forty odd years, I worked in close contact with a large variety of hydrocarbon-based solvents, a known cause of

Two transplants later, Jenny is off to medical school!

An athlete since preschool, Jenny couldn’t understand the fatigue she’d been having.  Only 10 minutes into a soccer game in high school, she had to stop.  On an open-gym morning, she felt so horrible she passed out while she was walking to her car to drive home.  

To her recent friends, her time fighting

Sarah was diagnosed with Severe

Before AnnaLeigh got sick, she was a happy, energetic and healthy 4 year old with a huge imagination.

I was diagnosed with PNH fifteen years ago, at the age of 51.  This is my story.

I grew up on the West Side of Los Angeles.  Raised by a single parent, my mother was a strong woman of faith.  My father, the eldest of twelve, died of a heart attack when I was about nine months old.  Four of his six brothers, and a couple of my cousins died at an early age.  My mother always said, “those Harness men have bad blood.”  Little did I know what she meant at the time.

Hi! My name is Stefania, I am 31 years old, and I am from Ecuador. My life changed in July 2018 when I was diagnosed with very severe

Alayna is doing all the normal activities for a child her age.  Learning to read, making many friends, and taking gymnastics are parts of ordinary life for kindergarteners.  She’s looking forward to soccer and more sports when pandemic life eases. Few signs remain that she battled