Sian Cook was 13 when she woke up one morning to find clumps of her hair on her pillow.
Frightened, the teenager ran downstairs and told her parents Vicky and Darin Cook.
Initial hospital tests could not identify the cause.
And it was only when the family visited Great Ormond Street Hospital, in London that consultants diagnosed Sian with a rare condition called linear morphea – which causes the loss of hair follicles on the scalp.
For the past two years she has been making monthly trips to the children’s hospital to receive treatment.
Through chemotherapy and other medication, her condition is finally now under control.
Sian, now aged 15, who is busy raising money for the hospital with a rock gig, has spoken of the pain she went through as her hair fell out.
‘I remember waking up in the morning and there was loads of hair on my pillow,’ she said.
‘I was scared because I didn’t know what was happening and what was causing it. I was always wearing a hat because I had so much hair falling out. It looked like a reverse mohican, and instead of having a strip of hair, I had strips of baldness.’
Sian, from Portchester, said she was regularly bullied about her hair and had to leave school.
‘It was horrible at school because I got bullied and I was always wearing hats to cover it up,’ she said.
‘I left school and was home-schooled for 18 months.’
Sian now attends Harbour School, in Sundridge Close, Copnor, Portsmouth.
Her mother Vicky, 44, said: ‘It created a lot of pressure on the family if I’m honest, we never knew what was going to happen from one day to the next.
‘I am very grateful for what the hospital have done – it is marvellous.
‘At first we had been told there was no cure but here we are now.
‘It’s still not cured, but at least it’s under control.
‘The nurses in Portsmouth have been great as well.
‘One nurse called Pauline Taylor, who has helped with treatment and care, has been wonderful.
‘We’re holding a fundraising gig now to show our appreciation to the hospital in June.’
THE family of Sian Cook will be holding a fundraising gig to raise money for Great Ormond Street Hospital.
Punk By The Sea takes place on June 18, in South Parade Pier, Southsea. Bands performing include Buzzcocks, Archive 45 and Zoo in the Sky. Tickets cost £28 if booked before April 1, then £32 after that and £38 on the door. Visit punkbythesea.co.uk or call Darin Cook on 07971 375912.
Through no fault of the family, the gig was scheduled on the same date as couple John Smith and Tracy Keysell who had booked South Parade Pier for their wedding. But, as reported in The News, pier managers say their booking had got lost.