“In May of 2011 my husband and I were excited to discover that we were expecting our first child. We started down the path that every couple expecting a child travels, including the usual hospital appointments. All appeared to be continuing as normal until I started to pass blood in my urine. I attended various appointments at the local hospitals until finally receiving a diagnosis of the rare, life-threatening, blood disorder known as PNH.”

“I was diagnosed with PNH in 2007 after a year and a half of tests and wrong diagnoses. On my diagnosis day I was told there wasn’t much known about PNH and I would get on average 10 years of life. I didn’t know that this was out-of-date, incorrect information. I was so severely exhausted by this point that I had to be carried upstairs and needed help getting dressed and undressed.”