A mum-of-two is running the marathon to raise funds for the Opsoclonus-Myoclonus Syndrome (OMS) Trust.

In a post on a fundraising page Hazra Patel said she wants to raise £2,500 as her cousin's daughter Safaa Master aged 9 suffers from the illness.

Safaa of Preston was born a happy healthy baby but at 11 months old she was diagnosed with a rare cancer Neuroblastoma(tumour) in her back and despite having it removed she developed neurological condition Opsoclonus-Myoclonus Syndrome (OMS) also known as Dancing Eye Syndrome(DES). 

OMS causes the immune system in her body to attack her brain. 

The OMS affected Safaa’s gross and fine motor skills - she lost all her skills was unable to stand, walk, talk or eat, she was constantly crying and in pain and didn’t sleep without sleep medication.

Asian Image:

Safaa pictured here with Paul Pogba

Hazra said, "Safaa has lived most of her young life in hospital, has had years of toxic medication such as 3 years of chemotherapy, IVIG, steroids, and lots of other immune suppressant medication, lots of operations and inavsive procedures and is gastrostomy fed through her tummy. 

"Safaa attends a special needs school and is developmentally delayed and has social, emotional and physical disabilities and has weekly private physio and conductive education however all this does not stop her and she tries her best and enjoys life. 

"She is a truly inspirational young girl.

"OMS/DES currently affects around 30 people in the UK. The Dancing Eye Syndrome Support Trust was started in 1988 by a mother of a DES child. 

"The Trust relies solely on sponsored money, which goes towards very expensive research - medical doctors from all over the world meet for research which DESST help organise/fund.

"I feel by running the London marathon and being sponsored I can help DESST to continue their research and to help other children with this condition."

You help the campaign by clicking here.