8-year-old UK girl trapped in 80-year-old body
Baku, February 19 (AZERTAC). 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 an 80-year-old woman, so every step takes its toll on her wellbeing - and every second spent with Mum is precious. 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. 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. 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 £6,000 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. 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. 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. 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. 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. 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. 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.
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