Heather Marzorati
Survivor

When Heather Marzorati, a wife and mother, says, “I feel like a newborn baby,” she really means it. Here’s why…

Two years after getting married, Heather lost her first baby – and learned she had a rare blood disorder: Paroxysmal Nocturnal Hemoglobinuria (PNH),the only cure for which is a bone marrow transplant. The PNH was likely caused by a previously diagnosed condition called Aplastic Anemia, which prevented her body from producing enough red and white blood cells or platelets.

After many, many visits with specialists, her PNH prognosis was that without a marrow transplant, she might survive 10 years. She was 23 years old at the time.

Her second pregnancy ended at 28 weeks when she was flown to Loyola Medical Center via helicopter for an emergency C Section. The baby was 2 lbs, 2 oz. He and his Mom spent two months at Loyola. He is a happy child, with normal cognitive health, but has Cerebral Palsy.

Just one month later, Heather’s health was deteriorating. She was experiencing cranial bleeding and other dangerous symptoms, complicated by the blood thinners required for treatment. Finding a bone marrow donor match on the registry was now crucial. While a donor was being sought, she took a new drug called Celeris. It was helpful but not a feasible long term solution.

A donor was found through a nationwide database of potential matching donors that RRCVB helps recruit and maintain – and she underwent a transplant in Madison, WI. Despite having to first undergo Chemotherapy to kill off mutated genes that were prohibiting normal blood cell production, she was only in the hospital three weeks.

She has written her donor – a young man – to tell him how important his gift was to her and her family. But she says no amount of thanks can really express how she feels. The donor gave through his arm – it’s commonly thought that marrow is only drawn from the hip. And she received the transplant through her arm.

As a result of her transplant, Heather now has a new blood type, and her blood tests say she’s male. Of course, her DNA says she’s female. Heather had her “second first birthday” on October 10, 2008 – it’s the anniversary of her transplant date. And the date of the greatest birthday gift she has ever received.

“All I need to do now is live my life one day at a time, enjoy my husband and my son. Oh, and I have to learn to live as a healthy person again. It’s so liberating not to have to fight an illness.”

Heather Marzorati hopes someday, with her physicians’ approval – to be an RRVBC blood donor. “It only seems fair,” she says. “RRVBC has been such an important part of my life for such a long time.