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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

“Your blood counts are nearly nonexistent,” the doctor said. 

Before this moment, Debra considered herself to be generally healthy, just tiring easily.  She assumed the cause was the big project at work on top of a host of family and volunteer activities, or perhaps issues with her blood pressure. It was autumn of 2017.

I was diagnosed with Severe

2021 Treatment update

“You will need to pack your bags and head to Children’s Hospital, we think it’s leukemia.”

Only a few days after a Complete Blood Count, Christy, Hailey's mom, heard these words from Hailey’s doctor. Hailey had just started kindergarten.

At summer dance camp, Hailey won the award for “Most Tired.” That puzzled her mom. As kindergarten progressed, Christy noticed the fatigue. She assumed that kindergarten must be exhausting for children. Christmas was approaching when she noticed Hailey’s bruises, in odd places on her body.

Here is Nick's story, as told by his mom, Pamela Karavite

We made it to another treatment day without anyone in our family getting sick! The week leading to treatment day has become pretty worrisome for me. What if someone in our family gets sick with or is exposed to COVID? Josh will not be able to get his infusion within the treatment window and then what? The questions I never thought I'd have to wonder about.

I know my fiancé well.  Even though he seemed to be healthy and his job kept him active, I knew it had been a long time since he had a medical physical, so I pushed him into an appointment.

Without symptoms, the doctor suggested routine blood work as a part of the physical.  We were surprised that all his counts were low.  The doctor decided to check again in a month, so I made sure that his diet was healthier and that he took vitamins, hoping that would correct any problem.