'I fight every day to keep my son alive': Mother had to close down Tipperary business after virus leaves her child paralysed

Offaly family living a 'nightmare' need your support.

Dylan White

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Dylan White

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dylan.white@iconicnews.ie

A mother who had to give up her Tipperary business after her son was left paralysed from the neck down is pleading with people to give her five-year-old a fighting chance to reach his full potential.

Billy Goulding was playing out in his back garden in Shinrone, County Offaly, in July 2014 when he suddenly collapsed. He was rushed to University Hospital Limerick and was later brought to Temple Street Children's University Hospital for further examination, where he was diagnosed with Transverse Myelitis, a neurological disorder that results in inflammation of the spinal cord when the coverings that protect nerve cells are damaged.

Eileen Goulding, who had to give up her business ‘Eileen’s Hair Studio’ in Nenagh to care for Billy, set up a GoFundMe and has been running fundraisers to help give her son a better quality of life. She emotionally recalls the day the family's lives changed forever.

“Billy was happy out running around like any normal two-year-old when my daughter Rachel ran in and said Billy had collapsed. I ran out and Billy was face down on the path. I picked him up and brought him in. He was red in the face, but it was a summer's day, he was running around the place and he's a very warm child. I showered him and he stood in the shower. I brought him up to the kitchen and changed him and as he got off my lap he took two steps, turned around and looked at me and his arms just went,” Eileen tells The Nationalist.

'Trouble' immediately sprung to Eileen's mind when she heard Billy collapsed. “I didn't think it was minor. I was in the kitchen making a cup of tea when Rachel said it and something told me ‘trouble’. I ran out the door and the mat went from under me. It wasn’t just a child fell - ‘ah yeah I’m coming’.  I felt panic. There were no warning signs. Billy was a tough two-year-old. He ran around the place and banged his head off things and laughed. He was a very sturdy two-year-old,” Eileen continues.

“After doing tests they told us that he has a rare condition called Transverse Myelitis. If you get a cold or a flu your antibodies fight the virus, but in Billy’s condition the antibodies fought the virus and attacked his own system which left huge swelling on his spine and after nearly a year in hospital the swelling went up the spine and landed behind his neck. He's paralysed now from his neck down,” a heartbroken Eileen explains.

Eileen, her husband Victor, their daughter Rachel (14) and son Odhran (7) spent months on end by Billy's side in Temple Street. Billy, who has a tracheostomy in his neck which allows air to enter his lungs, then spent three weeks in the National Rehabilitation Hospital in Dublin before being moved to Stoke Mandeville Hospital in the United Kingdom for treatment.

“We gave a long time in Temple Street - they are fantastic up there. Then we tried to get him in a rehabilitation and we fought for  along time to get him into the National Rehabilitation Hospital. We weren't there three weeks when they turned around and told us that they couldn't facilitate Billy in Ireland. We got an awful shock and said ‘what’s the story?’. They said ‘we don’t take tracheostomy kids’.  They said this is were the treatment abroad will step in. They put him on plane and he goes to Stoke Mandeville in North London for two weeks twice a year. He gets a four seater plane over from Shannon Airport.

“In Stoke Mandeville, as much as I hate to say it, they are a hundred times more with it compared to Ireland. They are so up there when it comes to physio. Every time we go back they tell us what to do and we go home and do it for six months. When we go back they say ‘well done, there’s improvement here’,” she highlights.

Eileen narrates caring for her son 24-7, who spent two and a half years on a breathing machine. “Billy gets up at half seven in the morning, and before he is even out of bed we have to empty his bladder. Then we put him into  standing frame - his knees, waist and ankles get belted in and he goes  upright and that’s for pressure on bones and it's good for the bowels to be upright. We do physio on his arms while the rest of him is  locked up in the standing frame.

"His arms are in slings, and we do two hours of arm work pushing tractors. Billy’s tractor mad -  if you put a tractor and trailer in front of him he will push it with his arms. Because he's in slings he can move better. Then he goes back into the kitchen and I do stimulation all over his body with pads - I’m stimulating all his muscles, chest, belly and legs for an hour. After that I do reflexology on him. He goes into a bike where he's sitting down with his feet in a machine with pedals and the machine is working in rotation - one way for 15 minutes and then it rotates back for 15 minutes.

"He's then taken back down to the old bedroom, put on his belly - he has to be on his belly for 30 to 35 minutes a day - and we lie on our bellies with him on one side and read a story to him for 15 minutes. Then we go on the other side to allow his neck to turn and read for another 15 minutes - it’s very hard for him to turn to the left.

"He's put in the standing frame for another two hours because he has to be in it for five hours a day. He also has splints on his legs, a rubber splint around his waist to keep his spine straight because if his spine goes crooked we are in trouble, and splints on his hands. We pay for private physio on Mondays, Wednesdays and Fridays.

"At seven o'clock in the evening, Billy has to get into his father’s jeep, goes to the farm yard and makes sure the tractors, trailers and everything are in bed. He comes home, has his Weetabixs and a nurse comes in at nine o'clock at night and sits at his bed looking at him until seven in the morning. We have a healthcare assistant during the day from eight o’clock in the morning to seven in the evening,” Eileen says.

Billy Goulding (5) is determined to reach his full potential.

The Goulding family are constantly fighting for supports for Billy. Eileen underlines the changes that are being made to their home and the local school where Billy will start in September. “It has been three years and people are still helping us but it's wearing away. We have spent huge money to build a therapy room onto our house, we had to widen up all the doors and put in a bathroom for his wheelchair. We got a grant of €20,000 but our building is costing €50,000 and we need a hoist which is €11,000 to run the length of the room for Billy.

“I spent every single day on the phone fighting for home tuition and managed to get five hours a week. Billy is starting Shinrone National School in September and the bathroom over there needs to extended and a hoist has to be put in. The principal, the teacher and the special needs assistant all have to be wearing alarms so if Billy goes blue the special needs assistant presses the button and the principal and the teacher come running because you only have two minutes to change his tube and save his life,” she says.

Eileen describes the psychological toll Billy’s neurological disorder has taken on the Goulding family. “I have closed off from the outside world. People say to me things that happen on the news or down the road or whatever, but I hear nothing. I can’t go as far as my front gate because you need two people to save his life if he goes blue, so I'm in the house everyday with another girl and it's go go go go with Billy. I’m supposed to have a nurse two days a week for five or six hours to let me have a break but a lot of the time I don't even get that because the nurse isn't there. I don't see my friends at all.  Nobody outside this family understands  what we are going through. Not even my own sisters - they are not suppose to. It's not normal what goes on in this house - it's an absolute nightmare. There are no facilitates for Billy to be changed if we go out for the day. I have to take him out of the car on a ramp, take him out of his wheelchair, bring him back onto the floor of the car, change him and put him back in his wheelchair.

“It really has greatly affected me. I had a salon in Nenagh and staff under me - an outgoing and busy salon and I had to give it up. I was told by a doctor that ‘Billy will never walk, he will never throw a ball, he will never wee or poo on his own and you will have to give up your business Eileen - this is what you are dealing with for the rest of your life’. You don't feel anything when someone says something like that to you. I remember just going back into the room to Billy and crying to the nurse, feeling absolutely helpless and on my own.

“My husband Victor is gone at five o'clock in the morning working on a farm down the road until seven in the evening. It has broken his heart for this to happen to his own little boy. He kind of keeps it to himself a lot - he’s gone all day and he finds that helps because he's out and about doing things, but when he comes back in the evenings he can see that it's so hard to do things with Billy. He's getting very heavy and it just breaks Victor’s heart.  He wishes Billy was up on the tractor with him and doing things a five-year-old boy should be doing.

“My daughter Rachel’s life has completely changed because I’m 24-7 Billy and it's very hard on the family. Rachel is fantastic. She suctions Billy, she helps me change a tube, she lifts him and takes him over to the couch to listen to music, she cuddles him but her heart absolutely breaks. There are a lot of things she wants to do on a Sunday and we can't do them.

“We find now that listening to people with their complaints is very hard - ‘my child had to get a stitch’ and things like that. I have become very hard and I find it very hard to listen to other peoples complaints, but my husband pulled me aside one day and said ‘Eileen, you’re going to have to listen because you're going to have no friends and nobody calling in if you can't have a chat’. I found that very hard because we are living a nightmare.

“Our son Odhran was small when it happened and that’s just the way he has known Billy. He’s kind of good with him and plays with him, but when a lot of kids come in he's gone and Billy is left there on his own,” Eileen says.

But despite Billy’s struggles, he remains “absolutely happy”and is determined to reach his full potential.

“He's an absolute dote and a fabulous child. His brain is 100 per cent with it and he's determined. There has been an improvement in Billy the last three years, but at a snail's pace. He can rise his left arm up and leave it back down when he's in his wheelchair. He just can’t do anything for himself like scratching his own eyes and nose.

“He's so happy in himself. All he wants is the silage and can’t wait for the summer. He calls me baw baw 500 times a day, even if there's someone else beside him. Syringe after syringe he opens his mouth and takes it. I turn the stimulation for his muscles up high - no man or woman would stand the shocks going through their muscles - and he just goes baw baw baw baw and I turn it down a bit. He has never complained about anything that he has gone through - he's a dream.

“Billy loves PAW Patrol and Peppa Pig. You could read book after book for Billy - he loves it. He loves painting  and going for a drive in the car. He loves to be outside all the time. We applied for a chair that he can work himself with his mouth eight months ago and we hope that it will be here before he goes to school in September,” Eileen adds.

Eileen thanks the people of Tipperary and across Ireland who continue to follow Billy’s journey and support fundraisers. “We seriously rely on fundraising for Billy’s quality of life and things we need for Billy. I really need people to understand and thank them for understanding that this isn't  a child that has a condition - that’s the way they are, they need a chair and that's it. This is a child that has so much potential for recovery given the chance. I set up ‘Billy’s Recovery Story’ Facebook page back when he was in Temple Street and there are thousands of people following Billy. Please keep on this journey with us because it's not going to be solved in two or three years time. This is a long road for Billy and we need people to help fundraise.

"I don't know who to ask anymore or what to do anymore. We are running out of ideas. We done a chapter calendar for him and it wasn't as successful as we thought it would be. It's not a tea party we need. We need one big day every year to keep Billy improving,” Eileen concludes.

Support Billy by clicking here