Annie Nealgrove, 15, is one of only 1,500 people in the world with Phelan-McDermid Syndome, which can cause a long list of disabilities including autism, speech difficulty, epilepsy, kidney problems and growth issues.
When Annie contracted encephalitis at 19 months old, the family was told she would not make it through the night. She had to learn to walk and talk again which with the help of speech and physiotherapy.
With hair down to her waist, Annie decided to have it cut and make a difference to other people’s lives at the same time.
Annie’s mum, Sharon Nealgrove, said: “She had wanted her hair cut for while, then she saw an advert on TV which showed children with no hair and so I explained about cancer.
“She said she wanted to have it cut short, so I suggested we ask people to sponsor her. Annie wanted to give the money to people with cancer and to help people with Phelan-McDermid Syndrome.”
Her long locks will be donated to the Little Princess Trust and sponsor money will be donated to the Brighton Breast Care Centre and Phelan-McDermid Syndrome Foundation UK.
Sharon said: “The charity was the first place I contacted when Annie was diagnosed, as her paediatrician did not know about the condition.
“They have been amazing and every couple of years they have a family day so we always go there.”
The charity offers grants for siblings to have holidays and days out, for speech and art therapy, communication aids and sensory equipment, amongst other support.
The Tidy Penguin Cutting Rooms, in Teville Road, Worthing, has been open for only a few weeks, so owners Sarah Willbridge-Raisbeck and Vicki Raisbeck kicked off the business by offering Annie’s haircut for free. So far, the total raised is £600, with more expected to come.
As well as funds, they hope to raise awareness of the condition as Sharon said there is not a specialist doctor in England and most consultants have not heard of it.
Sharon said: “There are a lot of regressions and it is unpredictable, it is a very complex condition. When you look at Annie she does not look like she has 19 different diagnoses.
“It is important for people to know the symptoms so they can understand all the different parts that make Annie.”
When not raising hundreds for charity, Annie enjoys surfing with the Wave Project in Brighton or watching her favourite Marvel films.
For more information on the salon or Annie’s haircut, visit The Tidy Penguin’s Facebook page