Fatal diagnosis apology for girl

Fatal diagnosis apology for girl

Llinos Owen has been re-diagnosed with epilepsy

An Anglesey schoolgirl who was mistakenly diagnosed with a terminal disease is due to receive an apology from hospital chiefs.

Jackie Owen was told her six-year-old daughter Llinos had the rare degenerative illness, Batten's disease.

The family, from Llanfachraeth, were later informed the diagnosis was incorrect and that Llinos had epilepsy.

Now Alder Hey Hospital in Liverpool is expected to issue an apology to the family.

As well as the emotional ordeal they went through, the Owens spent £7,000 on trips to Disneyland and Lapland to give Llinos the best possible quality of life in the short time they thought she had left to live.

They even put off having a third child because of fears it would inherit the condition.

We went through hell, then felt such a relief that she was alright

Jackie Owen

Although the family is elated their little girl does not have the disease, they say it should never have happened.

Anger and guilt

"Mistakes like this should not happen in the medical profession," said Mrs Owen.

"Our lives were on hold for a whole year after hearing the first diagnosis in February 2002.

"We had even gone as far as thinking about funeral plans and choosing hymns - these are the kinds of things that go through your mind," she said.

But Mrs Owen says she has not thought of taking legal action Alder Hey.

"We went through hell, then felt such a relief that she was alright.

"This was followed by feelings of anger, then of guilt for feeling angry because at the end of the day we still have her.

What is Batten disease?

Leads to the progressive deterioration of the brain and nervous system

Affects one in 30,000 people

No cure or treatment

Causes vision loss, seizures and dementia

Death can occur as young as eight years old

Inherited from both parents

Onset can happen between infancy and the age of 40

"Many people have suggested we should take further steps, but because she is still being treated at Alder Hey, it makes it difficult for us," she added.

An Alder Hey spokesperson said: "We do understand that the family have been through a very difficult time.

"We are pleased that we now know that she does not have Batten's disease.

"We are continuing to treat and support Llinos and her family and will be apologising for the initial misdiagnosis but we would want to do this directly to them."

They said that complex conditions such as Batten's are "often very difficult to diagnose".

Batten's disease is a genetic condition which can lead to vision loss, seizures, loss of motor abilities and dementia.

Life expectancies range from mid childhood to mid thirties.

In children of Llinos' age group, Batten's disease appears in its juvenile form and it is characterised by developmental regression.

Epilepsy is characterised by seizures, which may last seconds or minutes.