One last holiday together: Parents plan dream trip for identical twin boys with rare disease that doctors predict will kill them before they are teenagers
Freddie and Louie Dawkins the only identical twins in the world with deadly neurological condition Batten disease
Born seemingly healthy but now blind and autistic and will need wheelchairs
Diagnosis even more devastating for their parents who were told they would never have childrenFamily now planning final holiday to Florida to swim with dolphins
15:06 GMT, 11 October 2012
The parents of twins dying from a rare
genetic disorder which will kill them before they're 12 are planning the
family’s final holiday together.
Seven-year-old brothers Freddie and Louie Dawkins were born apparently perfectly healthy but were diagnosed with deadly Batten’s disease when they were three.
They are the only identical twins in the world with the neurological condition which affects just one in every 300,000 births.
Doctors told devastated parents Sarah Finney and Andrew Dawkins their sons would probably die before they were teenagers.
Freddie and Louie Dawkins (pictured with parents Andrew and Sarah) are the only twins in the UK suffering from Batten disease, a rare degenerative condition which means they will die before their 12th birthday
The boys were born apparently perfectly healthy but the one-in-a-million illness has left them blind and autistic
The boys are now almost completely blind and suffer from autism. In the coming years they are also likely to become wheelchair bound.
Blood tests revealed their parents – who were initially told they could not have children – both carry the Batten gene which they passed onto their sons.
Now the couple, from Nottingham, are planning a final dream holiday for the family before their sons – who turned seven on last month – become too ill to travel.
Mr Dawkins, 34, who quit his job as a furniture maker to care for his sons, said: 'It is heartbreaking watching the boys deteriorate and knowing that there is nothing that can be done.
'We are just making the most of each day that they are still here.
'The boys both love swimming, so we take them to the pool four times a week. But what they really love is the sun.
Even though they are blind they can tell it's is bright when it’s sunny so they are much happier in summer. We went on holiday to Portugal thanks to the charity Starlight.
We now want to take them on holiday to Florida where they can swim with dolphins.
The twins aged three months with mother Sarah (left) and today (right). Their birth was remarkable as the couple had been told they would be unable to have children
'When Sarah and I got together we swam with dolphins in the Caribbean and we always said if we had children we’d do it with them. It’s our final wish to do that one thing for our boys.
'That would be a real dream for us to do that but obviously that costs a lot but we are saving up.'
The couple, who have been together for 10 years, were delighted when Sarah fell pregnant in 2004.
Doctors had told Mr Dawkins he was unlikely to be able to father children after undergoing gruelling chemotherapy after being struck down with leukaemia aged 19.
Ms Finney was also warned the chances of her being able to conceive were low after suffering from endometriosis.
But against incredible odds, her pregnancy was healthy and Freddie was born weighing 3lbs 11oz while Louie was born minutes later weighing 4lbs 20z.
They sat up at the age of 11 months, took their first steps at 21 months, and even started to say their first words.
But before the age of three, their mother noticed their eyes started to flicker and they tripped over things.
The boys' parents, pictured in the Caribbean several years ago, are planning a final family holiday to Florida to swim with dolphins
The boys were referred to a paediatrician at the City Hospital in Nottingham where tests discovered they were both blind, despite having been born with perfect eyesight.
In August 2010 they were diagnosed with Late Infantile Batten Disease (LIBD) and their parents were told the boys had less than 10 years to live.
The disease is an inherited disorder of the nervous system which emerges in early childhood.
The cruel disease leaves youngsters blind, bedridden, and mentally impaired – with the life expectancy for children with the disease between 8-12 years.
A spokeswoman for the Batten Disease
Family Association said the charity was not aware of any other twins in
the UK with the condition.
Ms Finney, a nurse, said: 'At first I thought that it was because the sun was in their eyes, or it was just that they were being clumsy.
'But when their eyes started to flicker, I knew something was wrong.
Now blind and autistic, the twins cannot understand why they can no longer see, read or stand for themselves
'They would try and pick up objects from the floor and completely miss them. It was as if they were struggling to see.
'We were so shocked when we were told that they had lost their sight, as when they were born there had been nothing wrong with their vision.
'I’d heard of Batten Disease, and I knew it was something terrible. When the doctors told us that they both had it, it was devastating.
'We'd never imagined it could be anything as serious as that. We were so shocked, we couldn’t speak.'
She said the twins' frustration at the situation makes the situation even more heartbreaking.
'It is very difficult and frustrating for them as they don’t understand why they can’t see any more, or read their favourite books.
'It’s also hard because it’s like having toddlers who can reach anything, so we have to be with them constantly.
'All our efforts are focused on making the most of the time we've got left.'