A teenager with ‘Benjamin Button’ disease who left her with the body of a 144-year-old has died weeks after her 18th birthday.
Ashanti Smith, from West Sussex, died on Saturday, July 17, after living with the extremely rare Hutchinson-Gilford Progeria Syndrome, which left her eight years old for every year of her life.
The teen’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” mind.
Despite her body being the equivalent of a 144-year-old when she died, Ashanti was still able to enjoy turning 18 in May with a night out, drinking her favorite 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 last words to her mother like ‘you have to let me go’.
Ashanti Smith, from West Sussex, died on Saturday, July 17, after living with the extremely rare premature aging condition Hutchinson-Gilford Progeria Syndrome, which left her eight years old for every year of her life
Ashanti’s mother Phoebe Louise Smith, 36, paid tribute to her ‘brilliant and strong-willed’ daughter, who refused to let the disease affect her ‘loud and beautiful’ mind
Phoebe said, ‘Ashanti’s life was a joy. While progeria affected her mobility, it didn’t affect anything else.
“She was a typical, scruffy 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 took care of it every day.’
Phoebe continued, “Everyone loved and adored that little girl. She touched their hearts so much with her willpower.’
Phoebe said her daughter’s illness had “not affected her heart or willpower” (pictured, eight-year-old Ashanti who met Aston Merrigold of JLS in 2011).
The extremely rare ‘Benjamin Button’ disease that causes children to age quickly 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, starting in their first two years of life.
The name is derived from the Greek word meaning ‘premature’.
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 ultimate 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 more.
There is no cure for progeria, but ongoing research shows some promise for a treatment.
Source: Mayo Clinic
Ashanti had recently enjoyed her first girls night out after turning 18 drinking her favorite 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 identification. We all took her 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 favorite drink was Sex on the Beach.
“Her condition affected her mobility to walk that far. She had a broken hip and it had to be put back three times, then it finally came out again and she just walked with a broken hip.
“That child, my little girl, wouldn’t get into a buggy. Either she would be carried or she would walk.
“You’d ask her if she wanted a drink, she’d say, ‘I’m getting it — why are you treating me differently?’ She was very strong.
“It didn’t affect her will. It clearly affected her mobility and she had a heart condition.’
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] not at all. She was just, normal. She was like any other child.
“To be with her, she was just like everyone else.
‘[On the outside] she was 100 and inside she was 18.’
Tragically, the day Ashanti died started like any other, with Phoebe explaining: “[On the day she died] she walked around, had KFC, walked the park – absolutely fine. Then suddenly it came and it was about half an hour.’
Phoebe revealed how Ashanti told her mother to ‘let her go’ before she died on Saturday (pictured, Phoebe with Ashanti’s father Shaine Wickens, sister Brandi-Louise and their son Shaine)
Her mother insisted that despite her serious condition, Ashanti was determined to be treated like any other teenager (pictured with her sister Brandi)
Phoebe said her daughter was ‘loud’ and had drinks with friends and family less than a month before her death
Kayleigh added: “It was very disturbing. She felt a little sick. Shaine brought her home because she said she wanted her mother, [then her condition worsened].
Meanwhile, Phoebe continued, “She was having a hard time, but she said, ‘Mom, I love you. You have to let me go.'”
On Monday, the family paid tribute to Ashanti, with Phoebe explaining, “We’ve detonated 150 helium balloons for her and 400 pounds of fireworks, then we’ll make 300 lanterns.
“The condition gave her arthritis, and it gave her heart disease and heart failure. She died of heart failure and natural causes.’
Ashanti’s condition also affected her mobility to walk, and she had to suffer a hip fracture in three times (pictured at age 16)
Now her friends and family have launched a JustGiving page to help crowdfund the ‘biggest, smartest goodbye ever’ – promising the plan to throw a ‘party’ to celebrate her life
And the distraught mum of four has shared details about her daughter’s funeral, which she hopes will include four white horses, feathers, Pride flags and BTS memorabilia — because Ashanti was a huge fan of the K-Pop band .
Now her friends have a Just Giving page to help crowdfund for the “biggest, smartest goodbye ever” — and pledged to throw a “party” to celebrate her life.
Phoebe said, ‘The funeral is going to be gay and BTS [themed]. She has four pure white horses, with feathers and gay flags and BTS signs.
“Her coffins will have BTS everywhere and on top of that me and my four kids will be in gay t-shirts.
Phoebe called her daughter ‘very strong’ and revealed she ‘wouldn’t get in a buggy’ and was determined to walk despite her ailments
‘It’s going to be a party. She has a widescreen with videos and because she swore a lot, [there’s] going to be a blast. Everyone who sees the video will laugh so hard.
‘Ashanti was so proud to be gay. She was the proudest girl and she embraced the gay community. She loved it – and BTS.
‘She has about £5,000 worth of BTS goods in her bedroom that will stay there forever. I lock her door and let the kids sit there.
“It’s all BTS and homosexuality and I love it.”
Days after her death, friends and family built a floral tribute to the teen outside the family’s home
Monday night mourners released 150 helium balloons for Ashanti and a £400 firecracker (pictured)
The money raised on a JustGiving page will be used to give her daughter a ‘big’ funeral with disco lights, BTS-covered coffin and Pride flags – to mark the rich, vibrant way Ashanti lived her life