"Hard things are put in our way, not to stop us, but to call out our courage and strength."
Rebecca was our dear friend and the founder of our group. It is hard to put into words
what she meant to us. For many of us, Rebecca was the first other person with PNH we
had ever met. After years of living with a disease so rare that we knew no one else like
us, we found Rebecca, and she brought us together as a community to share with each
other our pain and our fears and to encourage each other to live life with courage and
strength. Finding Rebecca’s group was like coming out of cold darkness into a warm,
bright room full of friends. Rebecca gave us each other, and what a gift that was! This
group is her legacy.
Rebecca was diagnosed with PNH after losing her third child, Ryan, to stillbirth. Her
frustration at finding little information about PNH fueled a search for doctors who could
answer her questions about the disease and for other patients to talk with. She began the
PNH board in 1999 to keep in touch with the few patients she had found. Others
discovered and joined the group, and today we have members all over the world.
Rebecca lost her battle with PNH on July 29, 2003, after developing Budd-Chiari
syndrome, a complication of PNH. Dearest to her of all she left behind were her
husband, Brian, and her children, Joshua and Marilyn.