A Shinrone mother whose five year old son is paralysed from the neck down says that she won't rest until he walks again.
Little Billy Goulding was a strapping and extremely active two year old when he was struck down by Transverse Myelitis, a rare neurological condition in which the spinal chord is inflamed.
Within hours of Billy collapsing while out playing in the yard at his family home, his mother Eileen and father Victor were told by doctors that he was paralysed from the waist down. Speaking to the Offaly Independent this week, devoted mother Eileen, who gave up her hairdressing business to look after her son, says that there lives were turned upside the moment they received the doctors' prognosis.
“He can’t scratch his own nose, he can’t feed himself, Billy can’t do anything. He sits in a chair. I remember one day he was running around my mother said ‘He is a block of a two year old. I remember she saying that if anything ever happened to him, he’d be able for it. Because he was such a block. He dropped in front of me and five hours later we were told he was paralysed from the neck down.”
For the last three years, Eileen has spent all of her time caring for Billy, who starts in Shrinone NS in September. Because he currently needs a tracheostomy to help him breathe, two people are needed to care for Billy at all times in case the tube gets blocked and he stops breathing. During the day, a health care assistant comes in to help, while a nurse comes in at night to monitor Billy while he sleeps.
Eileen and the healthcare assistants spend hours every day doing physio on Billy to keep him in the best physical condition possible.
“He goes into a standing frame at half seven in the mroning for three hours so only his arms are free. Two of those hours we do arm exercises. After those two hours, I do stimulation, pads go on him to stimulate all the muscles in his body. After that we do reflexology, then I do a small bit of physio with him on a ball.”
“...We have to have him the best because if something comes out in two year’s time he is able for it.”
Every six months Billy and his parents spend two weeks over at Stoke Mandeville Hospital, which has one of the largest specialist spinal units in the world. The Gouldings have to travel to England for their son’s treatment because the National Rehabilitation Hosptial do not facilitate children with tracheostomies.
While initially angered that Billy couldn’t be treated in his own country, Eileen says that they now see it as a blessing in disguise.
“It’s the best thing every happened to us. They [the staff in Stoke Mandeville] have the equipment and knowledge. They see potential where no one else sees potential. They tell us what to do, they give us five [physio] movements to do for six months. We go home and do them and every six months they see an improvement. It is the best place for Billy.”
The trips to England, not to mention all of the other treatments that Billy needs, cost money. The Gouldings have set up a GoFundMe page to try and help with the ongoing financial burden.
“It’s not a once off cost. There is so much potential in Billy. If we get the right equipment or the right rehab Billy will get there.
“We have applied for a grant to modify the house. We have already modified the doors and a few other things. We need a therapy room for Billy and the extension will cost €50,000, while the grant is €20,000. We have to come up with €30,000. We also have to get a hoist for the therapy room and that’s €11,000. Then we are over and back to England every six months. While Billy’s therapy is paid for, we have to cover our two week’s accommodation and everything else.”
The last three years have taken their toll on Eileen and Victor and Billy’s older sister and brother Rachel (14) and Odhran (8) and impacts on other aspects of family life.
“It’s not normal circumstances for us here. I am never in the kitchen on my own with my husband. There is a healthcare assistant all day long. They are fantastic though and I wouldn’t be able to do all the work with Billy without them...My family can’t even babysit to let me out, because they are not trained in changing Billy’s tracheostomy tube. If Billy goes blue they are not able to change his tube to save his life. I can’t even have a baby sitter to get out.”
Despite the daily struggles caring for a child with severe special needs, Eileen says that Billy’s love of life and bright personality lifts her spirits.
A very intelligent little boy, who gives his mammy directions if she gets lost when they are out driving, Billy loves Paw Patrol and tractors. His positive attitude is an inspiration to everyone who meets him, Eileen says.
While hopeful that medical science will one day help her son walk again, Eileen says that she will continue to explore all avenues in her quest.
“It’s a miracle I have him. It could be an awful lot worse, it could be an awful lot better. I just thank God for what I do have and pray for an improvement. If anyone tells me there is a holy well in Dongegal, Cork or Kerry, I have got into the car with Billy and gone to all those holy wells. I never let anything pass by. If I hear of anything I try that. I am never giving up and never will.
“...I would have no problem chopping off my right arm right now, if Billy ran in with dirty wellies and and put pen all over the wall.
I would chop off my arm for a dirty house because my child had turned it upside down,” she ended.
If you want to contribute to Billy’s recovery, go to gofundme.com and search Billys Recovery Story. There is also a Billys Recovery Facebook Page.