My daughter woke up with a numb arm and died two weeks later
Summary
Alicia-Adele Axiak, an 11-year-old girl from Wales, was diagnosed with a rare and aggressive brain tumour called diffuse midline glioma (DIPG) and died 13 days after diagnosis. Her mother, Amanda Axiak, is campaigning to improve research funding and awareness for brain tumours, which currently receive very little funding despite being a leading cause of cancer death in young people.Key Facts
- Alicia woke up one day with a numb arm that soon spread to her face and leg.
- Doctors suspected a stroke and performed an MRI scan, which diagnosed her with an incurable brain tumour (DIPG).
- Alicia was previously healthy and active in sports like netball, gymnastics, and dance.
- The tumour was inoperable, and Alicia died peacefully surrounded by family 13 days after diagnosis.
- Brain tumours get only about 1% of UK cancer research funding, despite being a top cancer killer for people under 40 in Wales.
- Only 17.2% of brain tumour patients in Wales survive five years after diagnosis, much lower than the 61.5% survival rate for all cancers.
- Amanda started a charity group called Alicia-Adele’s Angels to raise money and awareness for brain tumour research.
- The Welsh government plans to focus more on cancer research, innovation, and clinical trial access in its new cancer plan.
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