Brenda’s courage in the face of unimaginable loss

“They say grief lasts as long as love – I will be grieving for both my children for the rest of my life.”

– Brenda, Mother to Jenaya and Ryan

Fanconi anaemia is a rare, inherited Bone Marrow Failure Syndrome that drastically increases the risk of developing serious illnesses and cancer. Brenda and her family had never heard of Fanconi anaemia until September 2018, four years after she lost her beloved daughter Jenaya to Myelodysplastic Syndrome at the age of 32. Jenaya left behind a young daughter who Brenda was now sharing the care of while processing her own grief. When she then received a call from her son Ryan to tell her he had mouth cancer, Brenda was overwhelmed with despair, “I remember thinking, ‘What have we done? What possibly could have caused such grave illnesses in both my children? What did our family do to deserve this?’”

After recovering from treatment of his mouth cancer, Ryan was then diagnosed with liver cancer. His condition raised questions, and it was suggested that he receive genetic testing which confirmed Ryan had Fanconi anaemia. Following Ryan’s diagnosis, tissue samples from Jenaya were tested, and she too was found to have the condition. It was a shocking revelation, although the family now had answers that helped them understand what they were dealing with. The genetic testing also brought great relief as they got confirmation that Brenda’s granddaughter was not affected by Fanconi anaemia though she, like Brenda, is a carrier.

Brenda’s journey was completely unfathomable and extremely isolating. Her clinician connected her with the Maddie’s Vision Tele-Support Service. “They were the only ones offering support,” she says. “The advice, the follow up calls, the information – it was all invaluable. It was the only place I could turn to.”

Tragically, Ryan passed just eight months following his Fanconi anaemia diagnosis due to complications of his liver cancer. He was only 34 years old. Before his passing, Ryan had urged Brenda to share their family’s story in the hope that by speaking out, they could prevent other families from suffering the same pain and heartbreaking loss.

Brenda’s involvement with the Maddie’s Vision Peer Support Program came from that promise to Ryan. “If sharing our story helps even one family, then that’s enough,” she says. “Helping others has helped me too. It’s given me purpose and a new perspective on life. It reminded me how quickly everything can change, and how important it is to have support from people who understand.”

Whilst Brenda will forever be grieving the loss of her children, she now allows herself to find joy again, being there for her beautiful granddaughter, while continuing to advocate for greater awareness, better diagnostic pathways, and broader access to genomic testing.

Maddie’s Vision supported researcher, Dr Lorna McLeman and her team from the GenomeStability Unit at St Vincent’s Institute of Medical Research who are investigating novel therapeutic strategies for bone marrow failure caused by Fanconi anaemia. Their research focuses on correcting the underlying genetic mutations that cause these conditions by using advanced gene-editing technologies to precisely modify haematopoietic (blood) stem cells. The team have proven the viability of this approach, having successfully edited blood stem cells in the lab.

Dr McLeman explains, “We hope that in the future, this could lead to an alternative treatment option that is less toxic for patients.”

As the research continues to advance, their goal is to prevent bone marrow failure in people living with Fanconi anaemia, offering new hope for patients and families impacted by these devastating conditions.

“From the time of our diagnosis to now, I’ve seen so much change,” Brenda says. “The research Maddie’s Vision has been able to fund is incredible, but there’s still more to be done.”

Brenda’s strength as she continues to honour the memory of her children is truly inspiring. Maddie’s Vision is dedicated to working towards a future where no one has to face the pain and unimaginable loss this family has had to endure.