The girl who will never grow up: Parents reveal anguish over cruel syndrome that reverses daughter's development and means she won’t ever be able to walk or talk
Aimee can no longer walk or talk and has no control over her handsRett syndrome is a genetic disorder that affects one in 12,000 females
12:08 GMT, 31 August 2012
A four-year-old girl has become an ambassador for a new campaign – to help cure children like her who are robbed of the chance of growing up.
Aimee Lloyd has Retts Syndrome – a rare brain condition which affects only girls, slows down growth and reverses development.
It most often strikes youngsters just after they have learned to walk and say a few words and starts dragging their progression backwards. Over time they lose their new skills and are left unable to communicate or use their
hands to hold, carry or manipulate objects.
Progressive condition: Aimee appeared to be a happy, healthy baby (left) but her parents became concerned when her development went into reverse. She was diagnosed with Rett's syndrome
Although most reach adulthood they lose their motor control essentially locking them into their bodies. Currently there is no cure for this cruel disease but Aimee's mother Jill, 36, has started a major fundraising campaign for research into the illness. She hopes a breakthrough will come in the next 10 years.
It is believed that Rett’s syndrome
may possibly be the first reversible brain condition as symptoms have
been successfully reserved in animals.
Presently Aimee is not able to
sit unaided, speak or walk.
Jill, who runs a sandwich shop in Preston, said: 'It is basically a break-down of
communication between her brain and her body. She also has no control
over her hands – she’s constantly wringing them.
'There’s some fantastic research going
on, especially the work of Professor Adrian Bird, who successfully
reversed the syndrome in mice. We are hoping and praying every day they
are one step closer to finding a cure. We’re not giving up hope.'
Aimee pictured with her brother Daniel and parents Justin and Jill. Rett's only affects girls and is caused by a mutation of a gene in the X chromosome
Jill, who also has a son called Daniel, 7, said the youngster was diagnosed just before her second birthday. Jill and Aimee’s dad, Justin Lloyd, 37, had alerted doctors after noticing slow development.
'Everything was normal during pregnancy,' she said.
'Daniel was six-and-a-half weeks early, so we thought she may come along early too, so they had me on steroids to build me up and she was just two weeks early.
'Everything was perfectly normal until her first birthday, she was a bubbly, happy baby who would wriggle around. The only thing was that she wasn’t sitting up on her own yet, but doctor said she would eventually catch up.'
But a few months later Aimee got a chest infection for a couple of weeks and during this time Aimee deteriorated significantly.
'She stopped doing everything she had done, so she would just lie there not moving. She was very placid; relatives said she was too good. Before she had been giggling and moving about. I thought she was maybe just weak, but I eventually took her to the GP,' she said.
Aimee was referred to Preston Royal hospital where Aimee’s muscle tone and bloods were tested.
An MRI scan was also carried out, which came back clear, but doctors wanted to see Aimee again on receiving the results of her bloods.
Aimee with her brother Daniel in 2008 (left) and the siblings together today. Aimee will never talk or walk
Aimee, pictured at two years old, which was when she was diagnosed
On April 17, 2010, Jill and Justin were told the reason for their daughter’s slow development was Rett Syndrome, which only affects young girls.
She said: 'We had no idea what it meant, we had never heard of it. They said a cure for the disease would not be found during Aimee’s life.
'Of course we were devastated, it was our little girl. Nothing can prepare you to hear that she will never be able to look after herself, talk or walk and that there was no hope of her getting better – it was very very difficult.'
Aimee was born a few weeks early so her parents didn't worry about her slow development
Jill and Justin along with family and friends, have been trying to raise as much money to enable this research by Rett Syndrome Trust, to be continued.
Jill has trained and completed charity runs, whilst Justin and friends took on a Welsh peak challenge, raising 5,000.
More recently, girls and boys gathered in Preston for a fun walk dressed as super heroes and princesses in a bid to raise money.
Justin said: 'At times you just feel numb because this condition is like a bereavement. We lost our dream of having a healthy daughter and everything that goes with that – that one day I would walk her down the aisle, have grandchildren.
'The first few months she would cry at least three hours a day, but now she is such a happy little soul. She loves being around her grandma, who is always singing.
'Her favourite song is Rumour Has It by Adele, she loves Rihanna too. We never go anywhere without music. One minute she’ll be screaming and when we put on music, she’ll be beaming. She really is one of the happiest girls you will ever meet.'
Sufferers of the illness – including
Coleen Rooney’s adopted sister Rosie McLoughlin – have small hands and
feet and experience a 'deceleration' of the rate of head growth.
illness was first described by Austrian pediatrician Andreas Rett in
1966 and affects only girls as boys have different genes and male
sufferers of the condition would rarely survive birth.
To donate visit www.justgiving.com/Walkingtoreverserett
For more information about Rett Syndrome visit www.reverserett.org.uk