Elayia’s Story

1-year-old Elayia was diagnosed with an extremely rare and aggressive form of AML in March 2022. Elaiya’s Leukaemia presents with a GLIS2 genetic mutation, which means that the standard course of treatment (chemotherapy) would not cure her. The family’s only hope was a bone marrow transplant.

Against all odds, they managed to find a bone marrow donor, but before they had the chance to celebrate, they were presented with yet more bad news. The results from her latest biopsy showed that the chemo was ineffective at bringing her into remission pre-transplant. The consultants unanimously decided to use stem cells from a mismatched umbilical cord instead, which was far riskier.

Elaiya’s transplant went smoothly but months later, Elayia’s parents’ worst fears came true. Not only did the treatment fail to achieve remission, but Elayia’s leukaemia increased tenfold, with no more options for treatment available in the UK.

Elaiya’s only hope is to travel to Houston, Texas to receive stage one of a two-stage treatment plan. A new drug called STRO-002 has been developed which specifically targets Elayia’s gene mutation. It has been administered successfully in 20 children so far.

The Azaylia Foundation donated £10,000 to Elayia’s fundraising campaign in December 2022.