Kayleigh's health journey began in 2021 when, at just 18 months old, she developed an unexplained rash on her legs. She was referred to Perth Children's Hospital (PCH), where blood tests showed abnormalities that led to years of investigations.
Over the following months, Kayleigh underwent countless tests, including blood tests, scans, biopsies and bone marrow procedures. Doctors discovered that her liver and spleen were enlarged, but despite extensive investigations, the cause remained unknown.
As her condition progressed, her spleen became dangerously enlarged, affecting her ability to eat and causing significant discomfort. After becoming seriously unwell, she was admitted to PCH and underwent a splenectomy in August 2023. The surgery and recovery were challenging, but removing her spleen made a remarkable difference to her quality of life.
Through PCH and Spleen Australia, our family received valuable education and support about living without a spleen. We learned about the increased risk of serious infection, the importance of acting quickly if she becomes unwell, and the vaccinations and boosters she needs to stay protected.
Later in 2023, Kayleigh finally received a diagnosis of systemic juvenile xanthogranuloma, an extremely rare disease that can affect multiple organs throughout the body.
Since her splenectomy, Kayleigh has continued to do well, although she is still battling the disease. It has affected her eyes, hearing, heart and liver, and she continues to be closely monitored by her medical team.
Kayleigh will turn seven next month (November 2026) and continues to impress everyone around her with her courage and determination. She has been taking an oral treatment called Trametinib, which has helped keep her disease stable.
Following extensive consultation between her oncology team and specialists overseas, doctors recently recommended that she begin a Clofarabine treatment trial. The treatment involves three days in hospital every 28 days, alongside her daily oral medication, and will continue for 12 months.
On 29 September 2026, Kayleigh had a port implanted and underwent another bone marrow biopsy before starting the new treatment the following day. So far, things have gone as well as can be expected. She has experienced headaches and some nausea after treatment, but she continues to face every challenge with incredible resilience.
We don't know what the future holds for our little girl, but we remain amazed by her strength and bravery. Her family is incredibly proud of her, and we remain hopeful that this treatment will give her the best possible chance for a healthy future.
As told by Kayleigh's mother, Ashleigh.
