Today, we are proud to welcome Alicia-Adele’s Angels to our growing family of Fundraising Groups – each playing a vital role in funding the work needed to develop kinder, more effective treatments and, ultimately, a cure for all types of brain tumour.
Amanda Axiak’s youngest child, Alicia, was adored by her three older brothers. A bright, energetic and deeply caring 11-year-old, she loved dancing, gymnastics, netball and swimming – above all, she loved her family.
In April last year, Alicia woke with a numb arm. As the day progressed, the numbness spread to her face and leg. Fearing these could be stroke symptoms, Amanda took Alicia to A&E. After initial tests, an MRI scan two days later revealed the devastating diagnosis: an inoperable diffuse midline glioma (commonly known as a DIPG). Just 13 days afterwards, Alicia grew her angel wings and passed away.
In the face of unimaginable loss, Amanda has channelled her grief into action by establishing Alicia-Adele’s Angels, determined to “turn heartbreak into hope.”
“If we can save even one child in the future, we’ll know we’ve made a difference in Alicia’s name,” says Amanda.
Earlier this month, 74 friends, family members, primary school staff and nurses donned their Alicia-Adele’s Angels t-shirts and ran the Caerphilly 10K, with younger supporters completing a 2K route. Together, they raised more than £4,000 for Brain Tumour Research.
In recent days, Amanda has also bravely shared Alicia’s tragic story to call on the Welsh Government to take urgent, transformative action to improve outcomes for brain tumour patients. She added: “Before Alicia’s diagnosis, I had never heard of a diffuse midline glioma. Shockingly, there has been no change in treatment for decades. Government funding for research is practically nothing. This has to change. Children are losing their lives.”
If Alicia’s story has inspired you, you can support Alicia-Adele’s Angels by making a donation, or email fundraising@braintumourresearch.org to enquire about setting up your own Fundraising Group.
Related reading:
