Barnstaple teen’s head shave to fight the disease that is stealing her mum away

A brave Barnstaple teenager is shaving off her full head of curly hair this month to fight against the terrible disease that will steal her mother away from her and her brother.

Ada's family was turned upside down last year when her mum Emma Bray was diagnosed with motor neurone disease at the age of 40 – there is no cure for the rare degenerative condition.

Ada, aged just 14, decided to have her curly hair – which she describes as ‘a big part of her personality’, shaved off on July 21 and she has already raised almost £5,000 for the Motor Neurone Disease Association.

Emma, now aged 41, had to stop working for local charities Encompass Southwest and North Devon Against Domestic Abuse when she could no longer walk and she now has only one working arm, which is rapidly weakening.

There is no treatment available for MND and she said she may only live for another year. Emma is incredibly proud of Ada for her sacrifice to raise money and awareness of the condition, as well as the support she has received from her son, aged 13.

Emma said: “Ada has masses of curly hair so cutting it will be a huge moment and is the biggest sacrifice she could make.

“I am so very proud of her and her attitude, it’s amazing and I can’t stress enough how great she is.”

Above: Ada is shaving her curls, which are a big part of her personality and has already raised almost £5,000. Credit: Emma Bray

Ada has set up a JustGiving online fundraiser, where she says: “I want to try and help a cause that helps so many people while they live with this condition.

“My hair is a big part of my personality and it has a pretty big attitude problem so I am hoping that by sacrificing it I can make a difference and try and fight against the disease that is stealing my mum from me and my brother.”

Emma was diagnosed with MND in July 2023 after living with symptoms since 2020 and being given various wrong diagnoses.

She said: “I had complete weakness in all of my limbs and was having to crawl around the house, but was told it was a psychological issue. My children have witnessed all this and it was very hard for them to see my decline and change in lifestyle"

“I am left in a wheelchair and have carers come in four times a day. I can get out and about but only with support. My children help loads by cooking, doing things around the house and making me comfortable.

“With MND there is no treatment and 33 per cent of people die within the first year of being diagnosed and realistically I’m looking at about a year for my situation.”

Above: Emma Bray, who is living with motor neurone disease, knows she may only have a year or so left with her two children. Credit: Emma Bray

Emma was finally diagnosed after she attended the Motionrehab centre in Leeds, made possible because her friend set up a GoFundMe page to raise funds to send her there for her 40th birthday.

Now she is under the care of an Exeter-based neurologist who holds a clinic once a month at North Devon Hospice.

She said the hospice had been a massive support to the family, with a hospice nurse visiting her at home and she also receives alternative therapy treatment from the hospice including reflexology.

Ada’s head shave will be held at The Park Community School, in Barnstaple on Sunday, July 21. It is not a public event but Emma said some of her teachers will be attending and the school had ‘been brilliant’ in their support for Ada and her family.

Adas hair will be donated to the Little Princess Trust, which makes wigs for children undergoing cancer treatment.

If you would like to sponsor Ada’s head shave, please go to www.justgiving.com/page/ada-barstow-1714650777254