Luci’s journey with Severe Aplastic Anaemia

Luci was in the prime of her life. At 28 years old, she had moved to Wales with her long-term partner to begin a new adventure. Nine months of fun and fresh experiences went by before Luci noticed herself feeling extremely weak. Trying to shake it off, Luci kept living her busy lifestyle until one morning she couldn’t even move from the bed to the bathroom. Luci raced to the emergency room and three weeks later was diagnosed with Severe Aplastic Anaemia. This is her story.

At 28 years old, Luci was in the prime of her life. She had moved to Wales with her partner and was enjoying a new adventure. Luci noticed herself feeling extremely weak and was rushed to the emergency room when she woke up unable to move from the bed to the bathroom. Doctors initially thought Luci had leukaemia and she was relying on blood transfusions to keep her alive. After further tests and a bone marrow biopsy, Luci diagnosed with Severe Aplastic Anaemia (SAA).

With no family nearby, her dad flew in from Australia, and Luci decided to return home for treatment. She underwent immunosuppressive therapy, which led to difficult side effects and significant mental health struggles.

“I just couldn’t understand it. It all came completely out of the blue. I was only 28, had recently moved to Wales with my long-term partner, looking forward to our future and weekends in Europe. But now my life was at risk, and mentally it was extremely difficult.”

As her treatment progressed, Luci’s condition did not improve and she was told she would need a bone marrow transplant. Fortunately, a perfect overseas donor was found, and she had her transplant in September 2016. Whilst the transplant was successful, Luci faced complications including a rare post-transplant cancer. She underwent further chemotherapy and slowly began to recover.

Her recovery involved regular transfusions, blood tests, and countless medical appointments, making the return to everyday life a long and demanding path. During this time, Luci’s long-term partner with whom she had envisioned a future with moved out, adding emotional heartache to an already difficult journey.

Two years later, Luci was well enough to travel and in 2020, she was given a clean bill of health. Luci is now thriving and enjoying life in Brisbane. She has committed herself to supporting others and has a successful marketing career in healthcare and patient advocacy.

Looking back, she reflects on the importance of support during such a lonely and frightening journey. When thinking about Maddie Riewoldt’s Vision and the impact the organisation has had, Luci shared:

“I remember when Maddie’s Vision launched.  To hear that Maddie and I had the same diagnosis was astonishing, as I didn’t know anyone else who had SAA. If the Tele-Support Service* was available when I was going through my diagnosis and treatment, the impact would have been enormous. To have access to a free service with a nursing expert would have been amazing.  I am so grateful that Maddie’s Vision is here, shining a light on Bone Marrow Failure Syndromes and working to make a difference for patients and families across Australia.”

*The Maddie’s Vision Tele-support Service launched in 2019 and Peer Support Program launched in 2023.