The West

Last family holiday for twins with deadly genetic disease
Last family holiday for twins with deadly genetic disease

The parents of twins diagnosed with a rare and deadly neurological disorder are planning their last holiday together as a family.

After a normal birth and babyhood, a slight flicker of the eyes was the only warning sign the parents of Freddie and Louie Dawkins had that all wasn't well with their boys.

When the twins reached three years of age, Sarah Finney and Andrew Dawkins were told by doctors that their children had Batten Disease, a rare neurological disease that would leave them blind - and take their lives before they reached their teens.

Now seven, the boys are completely blind and suffer from autism. But their parents are determined to make the most of the few years remaining, sharing their holiday plans in an interview with the Daily Mail.

"The boys both love swimming," said dad Andrew, who quit his job to look after the boys. "But what they really love is the sun.

"Even though they are blind they can tell it's bright when it’s sunny... We want to take them on holiday to Florida where they can swim with dolphins.

"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."

The tragedy is made more moving by the miraculous story of the boys' birth.

Dawkins was told he may never have children due to a battle with leukemia when he was 19 years old. Finney suffered from endometriosis which made conception even more unlikely.

Then against the odds, the boys were born in what seemed to be perfect health.

The symptoms of declining eyesight were picked up by mum Sarah, a nurse, when the boys were nearing their third birthday.

"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," she said.

"They would try and pick up objects from the floor and completely miss them. 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.

"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."

The disease has no cure, and the average life expectancy for children with Late Infantile Batten Disease is eight to twelve years.

The parents shared their story in support of Jeans for Genes, a charity that helps children with genetic disorders and the Batten Disease Family Association.

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