'Nobody understands the job of keeping your child alive' - mum whose son was left paralysed after contracting virus

An Offaly mother whose five-year-old son was left paralysed from the chin down after contracting a virus is fighting for the chance to improve his quality of life.

"I'll never forget that feeling of standing in the intensive care unit and being told that Billy will never walk again, he'll never be able to do anything for himself again," said Eileen Goulding.

Little Billy (five) was just two-years-old when he was left paralysed from the chin down after contracting a virus.

He had been playing in the back garden with his cousin and older sister when he suddenly collapsed. His mother quickly brought him inside when she noticed that his face had turned red and he was developing a fever.

However, she knew that something was seriously wrong when his arm went limp and his head rolled over to one side.

The family called emergency services and Billy was brought to hospital in Limerick but within five hours he was paralysed.

"At first the doctors didn't really understand what was going on. I was told it could be cancer, a stroke or Transverse Myelitis (TM)," said Eileen.

"The doctor told me, 'pray it's TM because if it's either of the other two, it will take your son's life.

“He had picked up a virus which didn't make him sick but his system created antibodies to kill it. But then the antibodies began attacking Billy. The doctors eventually diagnosed his condition as TM and he hasn't been able to do anything for himself ever since."

TM is a neurological disorder caused by inflammation of the spinal cord. Attacks of inflammation can damage or destroy myelin, the fatty insulating substance that covers nerve cell fibres.

In Billy's case, the inflammation caused by the attack of the antibodies led to scar tissue developing around his spinal cord. The scars have blocked communication between the nerves in the spinal cord and the rest of the body, leaving the little boy paralysed from the chin down.

Eileen was forced to give up the hair salon that she owned in order to take care of her son.

"I was told 'give up your business, this is your full time job now.' We walked into Temple Street in July 2014 and didn't leave until April 2015. And nobody knows what it's like to work full time to keep your child alive.

"Even now when he's with a nurse or a carer, I have to be just a call away. He has a nurse that watches over him while he sleeps. She arrives at 9pm and sits by his bed until 7am. Then we have the home care assistant at the house between 8am and 7pm. He needs full-time around-the-clock care," said Eileen.

"He is on a breathing machine at night and he also uses a tracheotomy [breathing tube] to help him breathe."

The tube needs to be changed regularly and is prone to blockages, something which creates distressing moments for the family.

"Just yesterday his lips turned blue. I changed the tube but he didn't improve. His face turned purple. I tried to keep him awake by talking to him about horses. It was so frightening. Eventually he came round but that type of scare isn't a once-off. This happens about two or three times a month.

"Nobody in two lifetimes would go through what little Billy has been through," she said.

However, despite everything the youngster has been through, Eileen said that Billy is a happy little boy and takes everything in his stride.

"He's always smiling. He loves blue tractors, they have to be blue or he doesn't want to know about them and he's obsessed with trailers. If we're driving and he sees a tractor without a trailer he goes mad," said Eileen.

The family live on a farm in Birr, County Offaly where Billy is showered with love from his his sister Rachel (13), brother Odhran (seven) and his father Victor.

"His sister Rachel is just 13-years-old but she doesn't have the life of a regular teenager. How can she when every time she comes home from school I have a child in my arms and I'm looking for an oxygen mask, a tube...? She adores him. She's such a good help. I remember when she was in the hospital with us and heard the news about Billy. She was devastated. Her heart was broken."

The family are now trying to raise funds through a GoFundMe account so that they can afford to get the particular treatment he needs, after the HSE advised it can't be done in Ireland.

"He has a one in a million condition so it's hard to get the help he needs over here. We just don't have the resources," explained Eileen.

The family have visited Stoke Mandeville hospital in North London for a week-long assessment where Billy "got on great". His mum said it's the best place for her young son to receive treatment. They provide intense rehabilitation that could hopefully improve Billy's quality of life.

"He has feeling in his body but we're hoping the treatment will allow him the use of his arm. He can move his left arm slightly as it is but the treatment could improve it even further. I just want him to be able to have some sort of independence, some sort of quality of life. If he could use even one arm he'd be able to use a wheelchair.

"And I don't mind if he has to spend the rest of his life in a wheelchair. I've seen lots of little children get along fine in wheelchairs, once they can operate it themselves. And after everything little Billy has gone through, it would feel like winning the lottery," said Eileen.

To help with Billy Goulding's treatment costs, visit his Facebook page here, or his GoFundMe page here.