AN INSPIRING young girl has become a symbol of resilience and hope as she continues to lead a relatively normal life after battling with medulloblastoma, a type of brain tumour.
Layla Mistry, a nine-year-old girl from Sonning near Woodley, is currently in remission but faces challenges such as hearing loss, kidney disease, and motor skill issues.
Her mother, Nimita, describes the experience as "going to hell and back" for the entire family.
She said: “There’s no other word for it, her treatment and the side effects were brutal.
“The treatment made her nauseous, she was vomiting all the time. She lost so much weight we had to put a feeding tube in. The ulcers in her mouth and throat meant she struggled to tolerate any food.
“Every part of our life was affected – sometimes there was no concept of respite as it was all we could think about - it was mentally and physically draining, but we had no other choice but to get through it a day at a time.”
Layla lives with several side-effects from the tumour, including high-frequency hearing loss, mild kidney disease, and problems with balance and co-ordination. After her first surgery, Layla also had to re-learn how to walk.
The conventional treatment for this aggressive form of brain cancer involves surgery, radiation, and chemotherapy, which often come with long-term side effects.
The Brain Tumour Charity hopes to change this by committing £1.5m of funding to research that could pave the way for advances in the way these brain tumours are treated.
The research aims to develop laboratory models to compare medulloblastoma development with normal brain development, discover what drives medulloblastoma formation and find kinder ways to treat the condition.
The Brain Tumour Charity’s Quest for Cures grant of £1.5 million over five years will help the team to understand how medulloblastomas form during embryo development by using stem cells to study rhombic lip development – the area in the cerebellum where medulloblastoma starts.
The research will also investigate what drives tumour development and how the DNA in the cells is altered during brain development, leading to tumour formation.
Using knowledge gained from these medulloblastoma models, researchers aim to translate this to pre-clinical tumour models created from patient tumours. These will be used for drug screening and will allow for rapid evaluation of new potential drug treatments.
On hearing the news Nimita said: “The chemotherapy treatment for children uses not only drugs that were developed for adults, but also drugs developed several decades ago.
"These drugs can have many side effects. Aside from the hair loss and nausea, chemotherapy can cause blood disorders, changes in thinking and memory and damage to organs, to name a few! The radiation treatment to the brain and spine can cause growth/spinal problems, as well as learning difficulties in the future.
“So far, Layla is doing really well academically and has even taken her grade 1 piano and ballet exams. But the future is unknown.”
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