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Thursday, 30 October 2014

Mother Of Dying Child With Alopecia Disease Says Her Daughter Should Be Allowed To Wear What She Wants

   Ashanti Elliott Smith, 11, was forced to remove her bright pink wig by a teacher at her school in West Sussex

The mother of a terminally ill 11-year-old with alopecia said her daughter was forced to remove a pink wig she wore to school as it might encourage others to dye their hair. Ashanti Elliott-Smith suffers from a rare disease which causes her body to age eight times faster than normal and means she is not expected to live past the age of 15. The pupil at Oakmeeds Community College, West Sussex, was told to take the wig off by a teacher because it was 'not cold in the school' and she felt so humiliated that she has not wanted return.
Her mother, Phoebe Smith, said: 'She was devastated when they told her to take it off. Her little heart was broken. It's disgusting. It is bright but she should have the right to wear whatever colour hair she wants. She was so proud of her hair but this has put her on a downer. When I took her into school three teachers by the office said she looked glamorous and beautiful and said how lovely her wig was.
Ashanti wanted to wear the wig to school to hide her alopecia, a side effect of Hutchinson Gildford Progeria


'But as soon as I turned my back they told her to remove it. It was so embarrassing for her. It was the first time she wore the wig into school and she has not been back in since last Thursday. It's a pink wig, come on, other children would have understood. I have only got a few years left with her so we want her to live it to the full.'

      Her mother Phoebe (right) said Ashanti was devastated and did not want to go to school the next day
Ashanti's rare condition, Hutchinson Gilford Progeria, causes symptoms including stunted growth, hair loss, weight loss, wrinkled skin, stiff joints, and heart disease.

The pink wig was donated by friends as Ashanti's family struggles to afford human hair wigs.

Ms Smith said: 'There is no rule about terminally ill children not being able to wear wigs. She looks a lot different to other children. We get a lot of bad comments about Ashanti and this knocked her right back.'
A student, Kate Boyd, commenting on Facebook, said: 'She suffers with alopecia and I think she should be allowed to wear a wig to school if it makes her confident and... makes her feel like anyone else at school.'
Colin Taylor, Headteacher Oakmeeds Community College, said: 'Ashanti attended school in a large purple wig which was the first time she had appeared in school wearing a wig or any form of head wear. Her Learning Mentor, who meets her every morning and supports her throughout the day along with a Learning Support Assistant, spoke to the Head of Year about it. It was agreed by the Director of Inclusion and Head of Year that Ashanti would wear the wig home but not in lessons because it was not cold in the school and she had never wanted to wear one before.

Ashanti suffers from rare disease Hutchinson Gilford Progeria which causes accelerated ageing 

Ashanti wanted to wear the wig to school to hide her alopecia, a side effect of Hutchinson Gildford Progeria
'We tried to discuss this with Ashanti's mother on Thursday but we were not able to make contact with her. 'We have worked closely with Ashanti's mother to ensure her wishes that her daughter is treated like all other pupils are met. Ashanti is a pleasure to have in the school and we believe we have done everything we can to meet both her needs and her mother's requirements during the first half term. Ashanti has settled well at Oakmeeds. At no time to our knowledge did she request special consideration about head wear but we would fully understand it if Ashanti was to need a hat or indeed a wig when the weather gets cold - even indoors.

Her father Albi Elliott , 44,  spent £3,500 charity money intended for Ashanti to go swimming with dolphins 

'In the past other children have worn wigs following serious illness, but ones that were of a natural look - not large brightly coloured ones. We are more than happy to discuss this with Ashanti and her mum when College starts again next week after the half term break.'

Her father Albi Elliott , 44,  spent £3,500 charity money intended for Ashanti to go swimming with dolphins
In June this year it emerged that Ashanti's father stole £3,500 of charity money that was intended for her to go swimming with dolphins.

She was given the donation by Sussex British Motorcycle Owners Club (SBMOC) in 2010 so she could go for a once-in-a-lifetime trip to America.

But her father Albi Elliott, 44, hid the money from the rest of the family and within two months had spent it - on trips to Tesco.

Blasting his actions as 'callous and despicably devious', the judge at Chichester Crown Court jailed Elliott for three years.


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