Charlotte Kerry adores music, getting glammed up and having a good time.
Suffering from the degenerative condition Friedreich’s ataxia (FA) is not about to stop her enjoying life.
The 28-year-old first saw signs of ataxia when she was a little girl.
She was always bumping into things and tripping over. But visits to the doctor always ended with them telling her parents she was simply a clumsy child.
It was not until she was 25 that there was a conclusive diagnosis. And by then she was already in a wheelchair.
She has the most severe form of ataxia which, she says, ‘literally means a lack of order, basically clumsiness.
‘It’s in my genetic make-up, it’s always been there but didn’t show itself properly until I was 19.
‘I used to always trip up when I was younger and I wasn’t allowed in nightclubs because bouncers thought I was drunk.
‘I was given a card that said ‘‘this person has ataxia’’ but they thought I was taking the mickey.
‘At college it started really showing. My friends used to ask why I walked so weirdly.
‘I was studying to be a vet and one day I was on a placement at a reptile shop and they called my dad and said “I think your daughter has been drinking”.’
Charlotte laughs when she recalls this. The list of problems associated with her condition is long but a smile is never far away from her lips.
She refuses to let FA take over her life – although it limits what she can physically do.
Standing is just about possible, but Charlotte relies on a wheelchair. She doesn’t cope very well in noisy places because her hearing is affected and she slurs her speech.
It is difficult for her to eat. She uses one hand while clutching the arm of her wheelchair for balance.
Swallowing is difficult and her eyeballs shake when she is tired. The walls of her heart are thickening.
Her sister Sam, 26, does not have it. Both their parents are carriers, and they each had a 25 per cent chance of getting it. Charlotte has regular check ups at University College London.
Sadly, there is no cure for the condition – which is the most severe of all the ataxias. A trial is underway at the moment to slow its progress with a drug called nicotinamide.
The initial results are good but there are fears over the long-term effects on people who take it. Nevertheless, Charlotte hopes to take part in future trials.
She is part of a sample who are regularly tested to see how fast the condition progresses in a bid by doctors to find out why it progresses faster in some than others.
Although every day is a struggle she says, with a smile: ‘I just get along with it’.
And she’s a giggler too. She admits that she sees the funny side of life and laughs at the most inappropriate moments.
Her condition certainly does not stop her having fun. She used to travel round the country going to superclubs to watch the world’s top DJs perform.
She never let her wheelchair get in the way of having a good time.
Charlotte says: ‘From about the ages of 19 to 25 I was out all the time. I was walking a bit skew-whiff and I was always holding on to someone but my friends were really patient. Eventually I started using a wheelchair.
‘The only reason I stopped is because it just fizzled out as I got older. I’m out all the time but now it’s going to out lunch or dinner with my friends.
‘Or I go out in Albert Road, Southsea, a lot. The wheelchair access is good. I’ve got lots of brilliant friends. Whenever I get down I go and see them. Or sleep it off. That usually works.’
But she shocked her family and friends when she announced she had agreed to strip off for a semi-naked calendar shoot to raise money for Ataxia UK.
She said: ‘My friend Sam put a message on the FA forum asking if anyone would take part and I said, “yeh!”. I warned my family and they were a bit shocked. In fact, they didn’t think I’d have the guts to do it, but I did. I was a little bit nervous but it’s really tastefully done. I’m pleased with the results.’
And in the new year she will be moving into her own flat, away from her parents’ home in Holcot Lane, Anchorage Park, which she can’t wait for.
She will be visited once a day by a carer but will look after herself the rest of the time. It’s a six-month trial to see how she gets on.
Her dad, Martin, a chief engineer, said: ‘I’m not nervous about it. She’s got to do it because she wants it so much.
‘When Charlotte was first diagnosed I was depressed and frustrated because there’s nothing you can do about it.
‘We took her to the doctors so many times but they kept saying she was just clumsy.
‘Charlotte’s diagnosis was a bit of a relief in one sense. It’s just frustrating because she gets frustrated.’
Ataxia laid bare
A new nude calendar for 2015 featuring six men and six women in the style of the famous WI Calendar Girls has been launched to help people understand the condition of ataxia.
Called Ataxia Laid Bare, the calendar is the brainchild of 33 year-old Sam Merchant, who features as Mr July in the calendar.
Sam has Friedreich’s ataxia, the same as Charlotte Kerry. It is one of the many different types of progressive ataxia, which affects the brain and central nervous system.
Ataxia affects 10,000 adults and around 2,500 children in the UK today.
The most common forms of ataxia lead to a gradual loss of physical function whilst the mind remains clear.
There are many different symptoms associated with ataxia which aren’t widely understood.
Often, people with ataxia can be mistaken for appearing to be drunk in public, for example.
Sam wanted to use the calendar to show 12 different symptoms of ataxia in a way people would remember.
People of any age may be affected, from babies to adults.
All money raised from the calendar will go to helping Ataxia UK find a cure for ataxia and in providing help for people with ataxia in the UK.