AS she heads slowly towards her brightly decorated, all-pink bedroom, Ashanti Smith turns and smiles at her mum with every step.<\/p>\n
Just like any eight-year-old, getting her to stick to her bedtime is a huge struggle. But for mum Phoebe, it is harder than most. Ashanti is trapped inside a body “aged” like that of an 80-year-old woman, so every step takes its toll on her well-being – and every second spent with Mum is precious.<\/p>\n
The brave little girl has an extraordinarily rare ageing disease. The condition – Hutchinson-Gilford Progeria Syndrome (HGP) – was diagnosed just weeks before her first birthday. Lively Ashanti has the mind of a typical primary school pupil.<\/p>\n
She loves listening to JLS and playing with her friends in the playground. But she weighs just 1st 13lb and is dwarfed by her five-year-old sister Brandilouise.<\/p>\n
And the disease has ravaged her limbs and joints so she finds walking long distances extremely painful. Despite this, her local NHS care trust refused to fund a new \u00a36,000 adapted electric wheelchair because she “was not disabled enough”. But last night The Sun stepped in to buy Ashanti the latest model – just like the one she is seen sitting in on the right.<\/p>\n
Ashanti often finds herself short of breath because of her weak limbs and other effects of the condition, which eventually causes severe hardening of the arteries and poor circulation.<\/p>\n
Fortunately, a pioneering twice-yearly treatment in Marseilles, France – administered as part of an ongoing drug trial – has prevented artery damage for the moment. But doctors admit they do not know how the disease will affect Ashanti’s circulatory system in the future.<\/p>\n
When the youngster was around a year old, her hair fell out. Now she plaits little sister Brandilouise’s locks every day to help out at the family home in Burgess Hill, West Sussex. Full-time mum Phoebe, 25, had asked health bosses to pay for a new wheelchair but they refused. Recently, she has been moving Ashanti around in a child’s buggy when she gets exhausted. She also tried to raise funds locally with the help of friend Rebecca Senger, 23, to buy a wheelchair privately before The Sun came to the rescue.<\/p>\n
HGP is an incredibly rare, incurable genetic condition. There are only a handful of sufferers worldwide and Ashanti is one of two in the UK. It occurs in just one out of four million newborns globally.<\/p>\n
HGP does not affect brain development but rapid ageing of the arteries leads to early death. Most sufferers do not reach their 15th birthday because of the damaging impact the disease has on arteries and heart health.<\/p>\n
It took doctors a year to diagnose the disease after Ashanti’s birth because it is so rare. Ashanti attends Manor Field School, a mainstream primary.<\/p>\n
She has just one annual health check at London’s Great Ormond Street Hospital For Children. Twice a year she visits the Marseilles clinic for the drug therapy, given via a drip, which is intended to slow the disease’s effect on her arteries.<\/p>\n
Phoebe said: “Ashanti looks frail and, while she may be on the inside, she is a powerful and determined young lady who won’t let anything get in her way. “When she was born she looked absolutely perfect. She had big, beautiful blue eyes and a little button nose.<\/p>\n
“The midwife handed her to me and called her ‘Precious’ and that’s how she got her middle name. “I thought she was absolutely perfect and didn’t have an idea that anything was wrong until she was around three weeks old and went for some checks. “Suddenly, she started jerking. I thought something must have just startled her but the midwife advised me to take her to hospital for checks. They came back clear.<\/p>\n
“Then, at six months old, she stopped feeding. No doctor could find out what the matter was. She was tiny, and so scrawny. She wouldn’t put any weight on. Then she started losing her hair. “Eventually, just a few weeks before her first birthday, she was under the care of a consultant at Great Ormond Street Hospital called Professor Harper.<\/p>\n
“He was puzzled at first, then he came to me one day and said, ‘I’m 90 per cent certain that Ashanti has a condition called Progeria.’<\/p>\n
“I was torn in two when I discovered what it meant. “I had never heard of it and, on one hand, I was glad the doctors seemed to have finally got to the bottom of her problems. “But when I found what it was doing to the inside of her body, I couldn’t come to terms with it.<\/p>\n
“The pain she would suffer, the fact that inside her organs were ageing so rapidly… I couldn’t believe it. “To me she was my perfect little girl, perfect in every way.” But Ashanti refused to give up.<\/p>\n
Phoebe continued: “As she has grown up, she has never let anything get her down or stop her in any way.<\/p>\n
“She is very frail and her hands are very weak. Her veins show all through her body, she has arthritis in her knees and she is very thin, no matter how much she eats. “Her legs are extremely skinny and her feet too are very bony. “She tires very easily too – just after climbing 12 stairs or walking down the street. I often have to pick her up and carry her.<\/p>\n
“Her limbs and joints ache but she doesn’t complain – she just gets on with life and does her best.” Ashanti also has just one layer of skin for every eight on a child without the condition.<\/p>\n
Phoebe said: “This makes it very sensitive and prone to cuts and bruises. But she is forever climbing over things and playing with her sister and friends at school.<\/p>\n
“Her teeth are also very delicate and she has to be careful when she is eating. But she has fantastic eyesight and is very sharp and alert. She does not miss a thing and keeps us all on our toes. “She calls Brandilouise her ‘big little sister’. Brandilouise is five, but three times her size.<\/p>\n
“Ashanti is just like any other little girl of her age. She adores pop groups, especially JLS. She is feisty and just wants to get on with her life.”<\/p>\n
Sadly, passers-by often stare at her in the street. Phoebe added: “A lot of people think she has leukaemia, and has undergone chemotherapy treatment, because of her hair loss. “If they ask, I tell them about her condition but for much of the time people in the street just stare or say things under their breath.<\/p>\n
“That kind of behaviour really gives me the hump, because she is my daughter and has feelings like anyone else. “My daughter may look different but she is an incredible, loving person. “We face life together and take each day at a time, and I know I am blessed to have such a wonderful little girl.”<\/p>\n
When asked about Ashanti’s wheelchair application, Sussex Community NHS Trust executive director of operations Andrew Harrington said: “We supplied Ashanti with a buggy last year after we assessed this as being best for her needs.<\/p>\n
“We advised her parents that they could contact us at any time for a review.”<\/p>\n
Source: The Sun.Co.UK<\/p>\n","protected":false},"excerpt":{"rendered":"
AS she heads slowly towards her brightly decorated, all-pink bedroom, Ashanti Smith turns and smiles at her mum with every step. Just like any eight-year-old, getting her to stick to her bedtime is a huge struggle. But for mum Phoebe, it is harder than most. Ashanti is trapped inside a body “aged” like that of […]<\/p>\n","protected":false},"author":0,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[],"tags":[],"class_list":["post-276166","post","type-post","status-publish","format-standard"],"yoast_head":"\n