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On October 24th, 2022 I received the phone call that would change my life. Enjoying a ten minute bubble bath, I initially ignored the vibrating phone along the tub's porcelain edge. My husband had recently embarked on an overseas business trip, and for the first time I was parenting as a single parent. Exhausted, my throat sore, I had just put my seven month old son to bed and wanted nothing more than to snuggle into my cozy bed and sleep. I never did get to sleep. 

The morning of 9/11/01 was a doubly surreal experience for me. I was waiting for an appointment with my doctor at M. D. Anderson's Leukemia Center in Houston while chaos erupted in America. The waiting room was packed, as usual, with people at various stages of their own life-threatening events, and I was struck by the relative calm in this room compared to the state of disbelief and panic playing out on TVs throughout the country.

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.