I change my clothes at least eight times a day because of the condition of my skin

A five year-old girl has been diagnosed with
a one in seven billion condition that has
never been seen before anywhere in the
world. Brave Madison Hunt has confounded a
series of experts with a long list of crippling
symptoms. Her skin is so delicate her clothes have to be
changed eight times a day to avoid irritation
and her brain has only developed to that of
an eight month-old baby. She also has epilepsy, autism and double-
joined, hypermobile limbs. Doctors at London's Great Ormond Street
Hospital eventually diagnosed an
abnormality with the nineteenth
chromosome of Madison's DNA. Her condition has never been seen before
anywhere in the world and could be named
after the youngster. Her parents Kelly and Mark, who provide her
with round-the-clock care at their home in
Basildon, Essex, have no idea what her life
expectancy is. But Kelly, 32, says she enjoys every day with
her "one in seven billion" little girl. She said: "She's not even one in a million,
she's one in the whole world - one in seven
billion. "It has crossed my mind that the worst could
happen and she could die but I'm not going
to let myself think about it. "We just have to enjoy Maddy and make the
most of her while we have her." She added: "When you brush her hair or
touch her, it's like having razors brushed
over your skin. "We're still trying anything and everything to
get around these problems, whatever suits
her is fine to us. "She's an amazing little girl, I don't know how
she does it. I wouldn't be without her, I'm so
proud to be her mum. "It must be so difficult for her, not being able
to understand anything that's going on. "It's like being put in another country where
you don't understand anyone who is talking
to you. Kelly's pre-birth scans all came back normal
and when Madison was born her family had
no idea she was so poorly. But at nine months she was unable to sit up
and by the age of three she was not walking
or talking. Despite celebrating her fifth birthday last
May, Madison's brain is only as developed
as that of an eight month-old baby. She is still in nappies and her parents have
no way of properly communicating with her. Her parents can cuddle her but her ultra-
sensitive skin means prolonged contact with
fabric leads to painful rashes developing on
her body. Loving: Madison with her mum Kelly said: "I realised there was something
wrong with Madison when she was about
two or three weeks old. "She wasn't doing the things she should
have been in terms of her movement and
awareness. "It was not until she got to 12 months that
doctors realised she had hyper mobile limbs. "This means she is double jointed and her
muscles take more time to form. "Doctors have checked all the databases all
around the world to see if there's anyone
slightly similar to Madison to help us
understand more about her. "But so far they've not found anyone and we
just have to live day to day. "She will never move out. She might, one
day, get to a level where you can sort of
understand her but there's no promise of
that. "But we love her no matter what." Madison is not the only disabled child cared
for by Kelly and Mark, aged 33. Her older sister, Bethany, ten, has arthritis
and learning difficulties although three year-
old Lola, the couple's youngest child, is
developing healthily. Kelly added: "It is very challenging having
two disabled daughters. I've not had a
proper night's sleep for ten years. "I suffer from stress and my husband had to
quit his job as a chef and take two cleaning
jobs to support us. "But I would not swap my girls for the world." Kelly and Mark are now desperately trying to
raise £5,000 to build a sensory room for
Madison. Meanwhile the youngster is helping doctors
at Great Ormond Street research chromosomal disorders by undertaking
tests. They hope Madison's help will find a cure for
herself and other children who develop
similar probl