Mother: "My Kids Have A Disease So Rare It Has No Name."

http://www.dailyrecord.co.uk/news/tm_headline=exclusive%2D-my-kids-have-a-disease-so-rare-that-it-has-no-name%26method=full%26objectid=18504790%26siteid=66633-name_page.html

20 January 2007
EXCLUSIVE: MY KIDS HAVE A DISEASE SO RARE THAT IT HAS NO NAME
Mum tells of anguish as docs search world for cases of illness
By Kevan Christie

DOCTORS are appealing worldwide to help two brothers disabled by a disease so rare it does not have a name.

Ethan Burke, two, and his brother Isaac, one, may be the only sufferers of the genetic condition, which leaves them unable to walk or talk and causes regular muscle spasms.

Mum Julieanne, 32, said: "The doctors are still looking into the boys' condition and are reluctant to put a name to it until they've sought further opinion.

"Our consultant, Dr Horrocks, told me he is conducting a worldwide search to find out if anyone in the medical community has come across a case like ours."

Julieanne and husband Mark, from Cumbernauld, near Glasgow. are desperate to find out anything which can help with their sons' treatments.

Julianne, whose eldest child, Emma, 14, has cerebral palsy, said: "It's rare for three children in a family to be born with disabilities. We want to know what has happened to our sons and we need answers."

The couple's second daughter, Jasmine, eight, is free from any genetic disorder.

But when Ethan was born, it became clear he had disabilities. He had an unusually large forehead and bone deformity on his nose. He is unable to walk or talk and has feeding difficulties.

His younger brother Isaac was born with the same condition and, like Ethan, has been having medical treatment at Yorkhill Hospital in Glasgow since birth.

Julieanne is now raising funds to provide transport for her family to make hospital visits easier and allow them to take trips together.

She has been in touch with football clubs and sports groups asking for donations she can auction on internet website eBay.

She needs to raise ?40,000 for a specially adapted people carrier which will take Emma's wheelchair and the two-seater buggy adapted for Ethan and Isaac. The couple have only one wage coming in from Mark, 34, who works as an assistant hotel manager.

Julieanne has already received donations from Celtic and Rangers, which will be auctioned in the near future.

She said: "It's important we get a vehicle big enough to carry six people and a lot of equipment.

"The carrier will have to have a ramp to allow wheelchair access and we're looking at a lot of money for something that size. But it would certainly improve our overall quality of life."

Despite the struggle the family face each day, Julieanne refuses to be downbeat.

She said: "Everyone at Yorkhill has been brilliant and we get a lot of support from the Fraser of Allander neurosciences unit.

"It's a round-the-clock job to look after the children but I want us to enjoy a family life together.

"I love all my children dearly and want them to receive the best care possible."

The Fraser of Allander unit at Yorkhill provides paediatric neurology services for the west of Scotland and beyond.

These include a diagnostic service for children with neuro-degenerative disorders and acute neurological disorders.

It also helps children with paroxysmal disorder and epilepsy.

A spokeswoman for Yorkhill Hospital said the unusual case of the Burke family was under investigation.

She said: "There has not been a definitive diagnosis for either child but both boys will continue to be monitored."

'We want to know what has happened to our sons'