Stories

Lyla's story

Lyla's story

Five-year-old, Lyla's parents, Kirsty and Paul, became worried when she started waking in the night, complaining of dizziness.

The doctors kept telling the couple that the dizziness, the loss of balance and appetite Lyla was experiencing was down to an ear infection but mother's instinct told Kirsty that it was something more.

If your gut tells you that there is something not right, push and push for the GP to do something.

- Paul, Lyla's dad

Lyla's symptoms weren't improving, so Kirsty persevered and took Lyla to A&E, where she was eventually referred for a MRI scan. The wait for the scan was agonising for the family and tragically confirmed their worst fears – Lyla was diagnosed with a pilocytic astrocytoma; a low-grade (non-cancerous) tumour, she was just three years old at the time.

Lyla had surgery immediately to drain the fluid on her brain and was put on a course of steroids to help reduce the size of the tumour to allow for surgeons to operate fully. The steroids had serious side-effects on Lyla – shouting, biting, and nipping to name a few.

Two weeks later doctors reduced her dosage and operated on Lyla to remove the tumour, where they successfully managed to remove 99.9% of it.

Lyla spent almost a week in intensive care and suffered severe after-effects from the surgery, including losing the use of her left side but Lyla is a fighter and a few weeks later and after some intensive physio, she started to get some movement back.

Now, two years on, despite having had six operations and endless blood tests Lyla is doing well. Although it's still a case of monitoring for re-growth, the family are just pleased to have their daughter back home.

Paul said: “You know your child better than anybody, if you really think something is wrong, don't give up. We're sharing our story to raise awareness of childhood brain tumours and to show that there is hope. Yes, your world falls apart but there is light at the end of the tunnel. Lyla is walking, constantly dancing and even back at school part-time – she's a real fighter".

You can follow Lyla's progress on the family's Facebook page - Lyla's Journey.