SHE is a youngster with a lovely smile.

But five-year-old Jemiah Pierre-Madigan is also a youngster battling a terrible condition, which could end her life.

Now her dad is to take to the streets of help her and other children like her.

Probation officer John Pierre-Madigan will be running the London Marathon this Spring to raise funds for the Wolf Hirschhorne Syndrome Trust.

Mr Pierre-Madigan, 43, from Cowlersley will be travelling down to London to run the famous marathon on Sunday April 25.

His application to take his place on the starting line came at the seventh attempt over 10 years.

He is running for his daughter.

Jemiah has the genetic disorder Wolf Hirschhorne and has battled severe and critical illnesses because of it since she was born.

She was diagnosed with the extremely rare disorder at birth. Though it is a genetic disorder, it had never occurred in the family before therefore no prenatal tests were taken to prepare parents John and Paula.

Mr Pierre-Madigan said: “There was no warning.Paula had a perfectly normal pregnancy and we had no inkling there was anything wrong.

“Wolf Hirschhorne Syndrome has disabled Jemiah. She is unable to walk, sit up correctly, suffers double incontinence and has reduced vision but she is still so bubbly.

“She goes horse riding every Tuesday with Riding for the Disabled and loves swimming every Thursday. On her good days she is amazing, lively and on form”.

However her disorder has put Jemiah on life support five times throughout her life and seen her having to undergo nine operations.

The last time she faced a battle came last February.

Her dad said: “She was playing on a rocking horse, having some food, when she slipped into unconsciousness and then stopped breathing”.

Wolf Hirschhorne also leaves her open to infections. Jemiah has battled with many including Swine Flu.

But the youngster who goes to Castle Hill School at Newsome is her dad’s motivation for the marathon. He has already been training for 13 weeks for the London Marathon.

He said: “Prior to my training, I hadn’t done any regular exercise for nine years.

“I train on five or six days per week and am currently running 15 miles every morning before heading to work in Halifax.

“I carried on with his training over the recent “Big Freeze” and even ran while on holiday in Scotland, running 12 miles in -12C.

“By the time I finished my run my water bottle was a block of ice”.

In April, Jemiah and mum Paula, who works for the Connexions Service in Huddersfield, will travel down to London to support John during the Marathon.

He is hoping to complete the run in under five hours and wants to raise at least £1,500 for the Wolf Hirschhorne Syndrome Trust.

The Trust is very important to John and his family. It offers support for families who have a relative suffering from Wolf Hirschhorne Syndrome, from the more practical help to bereavement support.

He said: “There are very few adults who survive with the condition.

“The Trust are a great help, we keep in touch with them and they call regularly. They are there every step of Jemiah’s condition”.

To help log on towww.justgiving.com/John-Pierre-Madigan

Wolf Hirschhorne Syndrome is a genetic condition and can be passed on by either parent.

There are on approximately 50 children in the UK who suffer from the condition at any time.

It is estimated to affect 1 in 50,000 births.

Wolf Hirschhorne Syndrome is caused by the deletion of part of a chromosome from either the mother or father.

The syndrome has a 50% mortality rating for children under three years old.

The more popular effects of Wolf Hirschhorne are learning disabilities, underdeveloped muscles and poor vision.