A dream come true for a girl plagued by seizures

A GIRL who suffers from a rare disease and is not expected to live beyond her ninth birthday is to enjoy a dream holiday to Disneyland after a fundraising drive by friends.

Four-year-old Katie Hogg from Elphinstone, near Tranent, has Batten's Disease, an incurable condition which gradually destroys movement, sight and speech.

The plucky youngster is confined to a wheelchair, cannot speak and has to be fed through a tube into her stomach, yet still manages to attend a mainstream nursery.
Now friends of Katie's mum Charlene, 20, have raised £2910 to send the pair to Disneyland, Paris, along with Charlene's fiance Derek Lusk, 19, and her sister Jodie, ten.

Today, Charlene told how Katie, whose room is filled with Disney toys and DVDs, was looking forward to meeting Cinderella during her trip to Disneyland in January.

Charlene, a full-time mum, said: "It means Katie can get her wish granted to meet Disney princesses in Disneyland and so she can enjoy herself for five days and be a normal child.
"She can't speak but she smiles when I mention it.

"It will be her first time on a plane."

Katie was diagnosed with the disease in July after a series of severe epileptic fits left her on the brink of death.

After her first birthday her family noticed a squint in her eye and she began stumbling into furniture.
Then Katie began having seizures which severely taxed her heart and a CT scan showed that her brain had shrunk.

Eventually she was diagnosed with Batten's disease, from which sufferers generally die before reaching their teens.

Her mum said: "Doctors say Katie's outlook is not very good. She's likely to reach an age of between six and nine and will probably not make it to her teens."

Generous friends raised the money for the holiday through three fundraising events, including an Ann Summers night, a seven-mile sponsored walk and a race night in a local pub.

They presented Charlene with flowers and a card containing the dates and details of the trip at Macmerry Miners' Club in Macmerry, Tranent, at the end of last week.

"Friday was quite an emotional night," said Charlene.

"I can't thank people enough - all those who gave donations, shops who sponsored us and my friends who organised it."

She added that Katie was already very excited about going to meet her Disney favourites.
The youngster manages to go to a mainstream nursery in Musselburgh, although she has to be pushed in a buggy-style wheelchair and is fed through a tube in her stomach.

Katie's seizures stopped for a while after her diagnosis but lately her health has dipped again and her fits have returned.

Charlene's friend Linda Bishop, 36, herself a full-time carer for her disabled son, spearheaded the fundraising efforts, with the race night raising the most money at just under £1000.

She said: "Katie is very ill and one of Charlene's dreams was to take her to Disneyland so myself and four friends set about helping.

"Katie has good and bad days. She's a very loveable girl.
"She's a wee happy soul, who sits and laughs.

"The family has a very worrying time when she's not well."

FACT FILE

Batten's Disease is a rare, aggressive and fatal brain condition. Named after the British paediatrician who first described it in 1903, it generally affects babies and young children, striking without warning in youngsters who have previously appeared healthy.

Early signs can be subtle and misleading, including slow learning, clumsiness and sight problems. It is often mistakenly diagnosed as epilepsy because of the seizures and convulsions it causes.
As it takes hold, the inherited degenerative disease gradually destroys sufferers' ability to move, see and speak. Victims become blind, bedridden and increasingly mentally impaired until they fall into a vegetative state and die.

There are two main types: infantile, which usually causes victims to die before they reach six years old, and late infantile where they live until they are about eight to 12. Few of the estimated one in every 150,000 people in the UK with the disease survive into their teens.

The illness is caused by a faulty gene. It leads to an build-up of substances in nerve cells throughout the brain and body, preventing the nerve cells from working properly.

Studies are being done using stem cells to try to combat the disease and treatments which slow the progress of the disease are available, but there is no cure.