Sussex

Hayley Okines: Bexhill funeral for progeria campaigner

Mourners gather after Hayley's funeral
Image caption Hayley became known as the "100-year-old teenager"

The funeral of a girl whose rare genetic condition led her to become known as the "100-year-old teenager" has taken place.

Hayley Okines, 17, died in East Sussex earlier this month from progeria, which causes sufferers to age eight times faster than normal.

Hayley, of Bexhill, was told she would not live beyond the age of 13 but underwent pioneering drug treatment.

Her funeral was held at All Saints Church in Sidley.

Paying tribute to her daughter, Kerry Okines said she could not imagine life without her "little chick".

She told the mourners how she loved her "sarcasm, dry sense of humour and pure stubbornness".

A letter from the Prince of Wales was read out in which he recalled "her infectious love of life" and described Hayley as "an inspiration to millions".

Speaking of his meeting with Hayley in 2004, Prince Charles wrote he was "impressed by her incredible spirit".

Parish priest Father Michael Bailey went on to praise her "courage and strong determination".

Image copyright AP/Progeria Research Foundation
Image caption Hayley, pictured with her mother Kerry, wrote her autobiography at the age of 14

Hayley's father Mark said his daughter was an inspiration to everybody she met.

"She never had a bad word to say about anybody. She just got on with her life and took anything life threw at her."

He said anyone who met Hayley was "awestruck" by her positivity and her outlook on her life and her illness.

"We were just so proud of her and what she wanted to do with her life about raising awareness of progeria...", he said.

Mr Okines said Hayley knew she was not expected to live past 13 but she did not let it faze her.

"We just took every day as the next day, not as a challenge, just as another day in the life of a child."

Father Michael said he hoped people would take away how remarkable Hayley was.

He said she rose to the challenge, seized the day and made the best of everything.

Image copyright BBC news grab
Image caption Mourners gathered at All Saints Church in Bexhill for Haley's funeral
Image caption Flowers stretched around Hayley's coffin inside the hearse

Hayley was diagnosed with Hutchinson-Gilford Progeria Syndrome at the age of two.

It affects just 124 children worldwide and causes accelerated ageing.

People with the condition also suffer heart problems, lack of growth and loss of body fat and hair.

Hayley was being treated for pneumonia and had briefly returned home from hospital on 2 April, the day she died.

During her short life, she had endeavoured to raise awareness of her condition, publishing an autobiography at the age of 14.

She was also the subject of a number of television documentaries.

Writing in her book, Hayley said: "My life with progeria is full of happiness and good memories.

"Deep inside I am no different from anyone. We are all human."

Image copyright BBC news grab
Image caption Hayley and her family had campaigned to raise awareness of her condition

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