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19-year-old Anna Sobon had been a typical college sophomore, active and full of plans about making her dreams come true.
When she began to get increasingly tired, she  thought it was due to her hectic schedule or maybe some lingering after-effects of her bout with mononucleosis the previous summer. Even as her strength was dwindling, Anna stayed determined to keep up with her daily routines while she waited for her symptoms to simply go away.

At the age of 3, I became ill with a rare blood disorder. I was bruising easily, and my platelet count was dangerously low. I was diagnosed to have ITP, had my spleen removed, and thought I was cured. However, my disease was either dormant or morphing into something else. My symptoms recurred with pregnancy, and after my second child was born, my disease was never dormant again.

It was early April of 2015 when I started getting headaches, weakness and abnormal heart rates simultaneously whenever I exerted myself. Stairs became a nemesis, as I could feel myself about to faint whenever I reached my apartment on the third floor. I thought that now would be a good time to visit the doctor. There I had blood work done and a few hours later they called and told me to go to the ER immediately.  “So…I shouldn’t go hiking right now?” I joked, despite the weakness in my legs.

This is the story of my beautiful granddaughter Annie, who celebrated her 13th birthday this April 2014.  It’s also the story of Annie’s big sister Katherine, as well as of her mother Melissa, and her father, Tom (my son). 

When my husband and I picked Annie up from pre-school in December of 2005, we noticed bruises on her arms and legs. Melissa looked over her body closely that evening and counted 14 bruises! She immediately took Annie to her pediatrician, who took one look at her and said, “Take her to The City of Hope.”

I grew up in Louisiana - born in New Orleans and raised in Lafayette. I joined the Army, and went to Seattle and worked at Madigan General Hospital where I met my wife. I was then sent to Vietnam. After I returned, I worked for a bank in Seattle for 16 years, becoming a vice president and manager. I helped finance an auto auction as part of this job, and as a result, I fell in love with the car businesses.  I was accepted for a Ford training program that lasted for two years at a Seattle Ford dealership.

I was a very active 17-year-old when I got the news. It was October of 2005, the beginning of high school basketball season in my hometown of Beckley, West Virginia, when I became ill. I thought it was a really bad cold or even the flu, but I was used to being sick and fighting through it, so I didn’t think much about it. I started antibiotics while I continued going to school and playing basketball. I would start to feel better for a while, then BOOM, it would hit me like lightning again. I would take more antibiotics and continue my life as usual. I thought I was tough.

I was a freshman in college when I was diagnosed with

“I never even had a cavity before I was diagnosed with PNH, plenty of denial later, I now live my life with PNH in it and don’t let PNH run my life!”

I lead an ordinary life, a healthy life.  My name is Alani and this is my story.