Help support Laya to live her best life!!!

Please help us raise £10,000 to get her more independence.

Laya has a severe neurodisability due to a rare genetic condition called UFSP2 gene. She also has epilepsy and developmental delay, which means she has constant seizures.

“There are a lot of unanswered questions about Laya’s condition as it is extremely rare, with only 14 cases worldwide, It has been identified as it is a fairly new condition and still needs a lot of research.

“Another problem is that the Cerebellum in Laya’s brain is not developing as normal. It is actually getting smaller and there is nothing they can do to stop it.”

When Laya was born everything seemed to be fine but at four-months-old she started having seizures which were diagnosed as epilepsy. An MRI scan and a range of tests at six-months-old indicated that Laya had underlying Mitochondrial Disease, a very rare life limiting condition.

I was also told that my daughter would never eat or drink orally and that eventually she would lose all capacity to talk, walk or would never have a normal development. “I was told to expect a very short life expectancy for Laya. This was extremely difficult for me to accept and caused me huge anxiety and worries.”

Against all odds, Laya improved after four months, and she started eating and drinking. Her communication skills also improved and there was an increase in her development.

Laya has recently attended footsteps foundation in Oxford of which was a great success. To continue this journey towards greater independence I am trying to fund Laya to attend swim Lab international in Lanzarote and NAPA a specialist paediatric intensive therapy programme to keep the momentum going for her success. I would like her to receive over the 3 weeks, Physiotherapy, Occupational therapy and Dynamic Movement Intervention (DMI) each day. At Swimlab International, the water will support Laya’s body allowing her a freedom of limb movement that she does not have on land. They use a unique combination of aquatic and land-based therapies to help children with a wide range of neurological and developmental disorders reach their full potential.

I am hopeful of the progress she will make and any improvement to her life is better than not trying. I hope you can help us fulfil our wishes and make my little girl’s life one that is worth living and fighting for. She has defied the odds so far, so why stop now.

On behalf of Laya I would like to thank you for your support.

Best wishes,

Fareda(Laya’s mum)