A teenager with ‘Benjamin Button’ disease that left her with the body of a 144-year-old has died weeks after her 18th birthday.
Ashanti Smith, from West Sussex, passed away on Saturday, July 17, after living with the ultra rare premature aging condition Hutchinson-Gilford Progeria Syndrome, which saw her age eight years for every year of her life.
The teenager’s mother Phoebe Louise Smith paid tribute to her ‘brilliant and strong-willed’ daughter, who refused to let the disease affect her ‘loud and beautiful’ spirit.
Despite her body being the equivalent of a 144-year-old when she passed away, Ashanti was still able to enjoy turning 18 in May with a night out, drinking her favourite cocktail.
The teen died with her mother, father Shaine Wickens, 33, and a family friend, Kayleigh Cartwright, 25, by her side – with some of her final words to her mum being ‘you’ve got to let me go’.
Phoebe said: ‘Ashanti’s life was a joy. Even though progeria affected her mobility, it didn’t affect anything else.
‘She was a typical, stroppy 18-year-old and I loved everything about her. She was brilliant, she was gobby. She spoke her mind and everyone knew it.
‘It didn’t affect her heart, her willpower or the way she felt about herself – she felt beautiful every day. I made sure of it every day.’
Phoebe continued: ‘Everyone loved and adored that little girl. She touched their hearts so much with her willpower.’
Ashanti had recently enjoyed her first girls’ night out after turning 18 and sipping her favourite cocktail, Sex on the Beach, with Phoebe and her friends.
Her mother insists that despite her serious condition, she was determined to be treated like any other teenager.
Phoebe said: ‘She was louder – louder than me – and I’m a very loud person.
‘There are photos of her first getting ID’d. We all took her out to the pubs, me and all the girls. We took her to three pubs three weeks ago.
‘She got tipsy and she loved it. Her favourite drink was Sex on the Beach.
‘Her condition affected her mobility to walk as far. She had a broken hip and it had to be set back in three times, then eventually it came out again and she just walked with a broken hip.
‘That child, my little girl, wouldn’t get in a buggy. She’d either be carried or she’d walk.
‘You’d ask if she wanted a drink, she’d say ‘I’ll get it – what are you treating me different for?’ She was very strong.
‘It didn’t affect her will. Obviously it affected her mobility and she had heart disease.’
Family friend Kayleigh Cartwright, 25, who was with Phoebe when her daughter passed away last weekend, also shared a tribute to Ashanti.
She said: ‘Her condition didn’t affect her [mentally] at all. She was just, normal. She was like any other child.
‘To be with her, she was just like everybody else.
‘[On the outside] she was 100 and on the inside, she was 18.’
Tragically, the day Ashanti died began like any other, with Phoebe explaining: ‘[On the day she died] she was walking around, having KFC, walking around the park – absolutely fine. Then it came on sudden and it was about half an hour.’
Her mother insisted that despite her serious condition, Ashanti was determined to be treated like any other teenager (pictured with her sister Brandi)
Kayleigh added: ‘It was very upsetting. She had been feeling a bit sick. Shaine brought her home because she said she wanted her mother, [then her condition worsened].
Meanwhile Phoebe continued: ‘She struggled but she said “Mum, I love you. You’ve got to let me go”.’
On Monday, the family paid tribute to Ashanti, with Phoebe explaining: ‘We set off 150 helium balloons for her and a £400 display of fireworks, then we’re doing 300 lanterns.
‘The condition gave her arthritis, and it gave her heart disease and heart failure. She passed away of heart failure and natural causes.’
Ashanti’s condition also affected her mobility to walk, and she had to have a broken hip set back in three times (pictured aged 16)
Now her friends and family have launched a JustGiving page to help crowdfund for the ‘biggest, brightest send off ever’ – vowing the plan a ‘party’ to celebrate her life
The extremely rare ‘Benjamin Button’ disease which causes children to age rapidly and has NO known cure
Progeria, also known as Hutchinson-Gilford syndrome, is an extremely rare, progressive genetic disorder that causes children to age rapidly, beginning in their first two years of life.
The name derives from the Greek word meaning ‘prematurely old’.
Children with progeria generally appear normal at birth. During the first year, signs and symptoms, such as slow growth and hair loss, begin to appear.
Heart problems or strokes are the eventual cause of death in most children with progeria.
The average life expectancy for a child with progeria is about 12 years, but some with the disease die younger and some live 20 years or longer.
There’s no cure for progeria, but ongoing research shows some promise for a treatment.
Source: Mayo Clinic