My daughter died at just 18 after rare condition left her with the body of a 100-year-old
A TEENAGER has died after a rare condition left her with the body of a 100-year-old.
Ashanti Smith had been living with the ultra rare premature ageing condition Hutchinson-Gilford Progeria Syndrome, which saw her age eight years for every year of her life.
Tragically, the 18-year-old died on July 17, telling her heartbroken mother that she had to “let me go”.
Her mum, Phoebe Louise Smith said her daughter lived her life to the fullest and had refused to let the illness 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 mum, dad Shaine Wickens, 33, and a family friend, Kayleigh Cartwright, 25, by her side.
Distraught mum-of-four Phoebe who lives in West Sussex has now shared details of her daughter's funeral, which she hopes will feature four white horses, feathers, Pride flags and BTS memorabilia - as Ashanti was a huge fan of the K-Pop band.
Her friends have launched a JustGiving page to help crowdfund for the send off which they say will help celebrate her life.
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.
What is Hutchinson-Gilford Progeria Syndrome?
PREGORIA is a rare condition which is sometimes referred to as the ‘Benjamin Button’ condition
Progeria causes accelerated ageing, with sufferers commonly displaying ailments associated with old age.
The Progeria Foundation says: “Children with Progeria begin to display many characteristics of accelerated ageing within the first two years of life.
“Progeria signs include growth failure, loss of body fat and hair, aged-looking skin, stiffness of joints, hip dislocation, generalized atherosclerosis, cardiovascular (heart) disease and stroke.
“The children have a remarkably similar appearance, despite differing ethnic backgrounds. Children with Progeria die of atherosclerosis (heart disease) at an average age of fourteen years.”
People with progeria often have small, frail frames compared to their heads, and have a distinctive appearance of a shallow jaw and pinched nose.
They also suffer full-body alopecia – where they have no hair.
Often the physical appearance caused by their condition becomes more pronounced as they get older.
"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.
"Everyone loved and adored that little girl. She touched their hearts so much with her willpower.”
On the day Ashanti died, Phoebe said she had been walking around the park as normal, and had even enjoyed a KFC.
“Then it came on suddenly and it was about half an hour.
"She struggled but she said 'Mum, I love you. You've got to let me go'."
GIRLS' NIGHT OUT
Phoebe insists that Ashanti had been treated like other teenagers and had even tried a Sex on the Beach cocktail with her mum and her friends to celebrate her 18th birthday.
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”, Phoebe said.
Phoebe said Ashanti would refuse to get in a buggy and would either walk or be carried.
She added: "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."
Phoebe is now planning a 'big' funeral with disco lights, BTS-covered coffin and Pride flags - to mark the rich, vibrant way Ashanti lived her life.
Phoebe said: "[On Monday night], 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.
"The funeral's going to be gay and BTS [themed]. She's having four pure white horses, with feathers and gay flags and BTS signs.
"Her coffins going to have BTS all round it and on top it's going to be me and my four children in gay t-shirts.
"It's going to be a party. She's having a wide screen with videos playing and because she swore a lot, [there's] going to be a bleeper. Everyone who sees the video will laugh so hard.”
'Like any other child'
She explained that Ashanti was proud to be gay and had embraced her community.
The teenager also loved BTS and had £5,000 worth of memorabilia in her room, which Phoebe says she will put a lock on and allow the children to sit in there.
Family friend Kayleigh Cartwright, 25, who was with Phoebe when her daughter passed away last weekend, also shared a tribute to Ashanti.
She explained that Ashanti had been feeling sick, so her dad bought her home because she wanted to see her mum Phoebe.
She said: "Her condition didn't affect her [mentally] at all. She was just normal. She was like any other child.
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"To be with her, she was just like everybody else.
"[On the outside] she was 100 and on the inside, she was 18.
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"[With the money donated] we're hoping to pay for Ashanti's funeral, for the horses and to go straight to the funeral directors.”
You can donate to Phoebe's page here.