Woman with PNH Dies Just Weeks Before Bone Marrow Transplant


One thing is sure: 29-year-old Aimee Read was always a fighter. At just two years old, Aimee was diagnosed with leukemia. After two years of chemotherapy and six months of remission, her leukemia returned. Her mother Wendy launched an awareness campaign to find a blood marrow donor match. In addition to having over 5,000 people join the bone marrow registry, Wendy and her family also found a donor for Aimee. By 10 years old, Aimee had once again beaten her leukemia. Then, at 13 years old, Aimee was diagnosed with myelitis. It took her just three months to start walking again. Over the next 16 years, Aimee persisted through the loss of two pregnancies, a brain tumor, and a diagnosis of paroxysmal nocturnal hemoglobinuria (PNH).

Unfortunately, shares the Manchester Evening News, Aimee passed away in May 2022 while awaiting another bone marrow transplant. Her first transplant took place in January of this year, but did not help to improve Aimee’s condition. However, Aimee and her family learned that there was another donor; Aimee could receive her transplant in July 2022. The family had hope. But in May, Aimee contracted double pneumonia. She passed away surrounded by her family and lots of love.

Her family is devastated by the loss of their loved one, who they describe as being strong, caring, and joyful. In Aimee’s memory, her family is raising funds for the St. James Intensive Care Unit, as well as the Anthony Nolan charity. If you would like to donate, you may do so here.

Paroxysmal Nocturnal Hemoglobinuria (PNH): An Overview

PIGA gene mutations cause paroxysmal nocturnal hemoglobinuria (PNH), a rare hematopoietic stem cell disorder which affects red and white blood cells, as well as platelets. The PIGA mutations are not inherited, but rather occur spontaneously. Overall, the gene mutation causes the formation of rapidly multiplying PNH cells. As the immune system responds, it causes healthy cell death while PNH cells survive. PNH also causes red blood cell destruction and platelet abnormalities. An estimated 30% of PNH cases result from aplastic anemia treatment. PNH symptoms often manifest by age 35-40. These symptoms can include:

  • Fatigue
  • Chest pain
  • Headache
  • Male sexual dysfunction
  • Kidney disease
  • Difficulty swallowing or breathing
  • Abdominal contractions
  • Dark/bloody urine
  • High heart rate
Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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