Brave battle back to a normal life
Seven months ago Oakura youngster Shay Wells, 11, was told he would never walk again, but now he's getting back on his feet. Helen Harvey reports.
Just before Christmas doctors gathered around Shay Wells' hospital bed to give him and his mother Tammy Wellaway the results of his tests. But Shay, then 10, was only interested in one thing. He would be able to play rugby again, wouldn't he?
The doctors didn't pull any punches. Not only was rugby off the agenda, it was unlikely he would walk again and he would be lucky if he would even be able to bear any weight on his right leg.
Time will tell whether the doctors were right about the rugby, but they were wrong about the walking.
Seven months later Shay, 11, is not only walking, he is surfing, riding his skateboard and playing netball and football. Though, he says frowning, his kick isn't what it used to be. "I used to have a really good kick."
However, there is a good chance it will improve, considering his leg is still only 80 per cent right.
On December 7, last year, Shay suffered a spinal stroke.
The night started well. He was staying at "Granny Helen's" and was outside playing spotlight in the dark.
Then, when he was hiding in a bush, he suddenly felt an intense heat in his back, he says.
"It was indescribably painful. I was, like, so sore then I was, like, falling over in the tree and got super hot and tried to walk back inside."
He crashed on the couch and his back felt "ridiculously sore".
"We didn't know what to do." He started to feel worse, so they called an ambulance.
The paramedics checked him out and sent him to bed to sleep it off.
The next morning he was crying with the pain.
"I tried getting up to go to the toilet. I tried walking, but I fell over. I was trying to crawl and I was freaking out."
Twenty four hours later he had no movement on his right side, Tammy Wellaway says.
By that time Shay was at Taranaki Base Hospital, where he had an MRI scan.
The initial diagnosis was Guillain Barre Syndrome, so he was given medication to strengthen his immune system.
However, that turned out to be incorrect, so 10 days later he was sent to Starship Hospital in Auckland.
Doctors there couldn't figure it out either, Wellaway says.
"They thought it was a swelling in the spine and told him he could go home the next day. At one stage they thought it was a mental thing and he needed therapy, counselling and stuff."
It took a week of tests before they did an MRI higher up his neck.
"When they went higher, they found it was a stroke. They found the point of damage in his spine where it came from. An angiogram confirmed it. Shay had a coarctation in the aorta."
In a nutshell, this caused a blood clot which blocked blood going to the spinal column. The resulting nerve damage meant he was unable to walk for months.
A doctor and anesthetist gave Wellaway their diagnosis based on the extent of damage in the spinal column and what they witnessed in older people, she says.
"Shay's young, so it was hard to compare, because there are not very many cases of children his age having this happen.
"I was totally shocked. I couldn't sleep. I was really upset. It was just horrible, the worst time of my life really.
"The next morning they spent 10 minutes telling us about the angiogram and what they had found and Shay was like, 'Well, can I still play rugby?' because that was his favourite thing to do. And they said, 'We don't think you'll be walking again. You'll be lucky to be weight bearing'."
She wasn't expecting the medical staff to tell Shay, she said.
"I would have liked to have had a plan in place, a counsellor available. It was a really big thing."
Shay and Wellaway cried at the news, Shay thinking he'd never be able to do "anything ever again".
But then he said to his mother: "You be strong for me and I'll be strong for you. I'll be like Jonah Lomu and the Dalai Lama."
But before Shay could start emulating the strong and the wise, he had to recover from the stroke.
"His heart rate was low and we were just concerned about surviving at that stage. He couldn't sit up in his bed and was in a lot of pain."
Wellaway spent most of the time massaging Shay's leg, moving his foot, which would just flop, and manipulating his hip.
And she became obsessed with his diet.
"They'd bring in yoghurt boxes, which are high in sugar, and refined bread, so I was in the hunt for healthy food which was hard to get at Starship, especially because I didn't have a car."
She would give lists to everyone who came to visit to buy blueberries, fresh fruit and vegetables.
"I'm sure that had a huge impact on his success, because it's what you put into the body, as well, that helps it build new cells."
The first breakthrough came on January 2. It was Shay's 11th birthday and he moved the big toe on his right foot, he says.
"It was so cool. The best birthday present ever."
He was then able to get around in a wheelchair and get out of his room.
"But I was still so sore, I couldn't handle any touching on my back. It was so painful."
In the meantime his mates made him cards and raised some funds involving families from his school, Oakura, and bought him an iPod and headphones. And, later, friends from the community bought him an iPad.
"That was so cool. I was so bored in the wards. I had nothing to do. I was just lying down, like, forever."
A week later Shay was able to leave Starship and move to the Wilson Rehabilitation Centre on the North Shore.
He arrived in a wheelchair unable to bear any weight on his right leg.
Out of the chair he used a gutter frame and was dependent on his left leg and upper body strength to move, Wellaway says.
"Even two to five metres was painful. He'd be sweating and wanting to sit down."
Every day he had two physio sessions and some of the exercises he did were quite painful, but while he was there Shay's muscle co-ordination and balance grew hugely, she says.
By the time he returned to Starship on February 18, he was able to walk 100m with crutches and could manage stairs if he had a crutch and held on to the banister.
And even though he still had the brace on his foot, he completed a challenge to climb 124 stairs.
Throughout his rehab, Shay tried to be strong, but he was worried about the surgery to fix the coarctation in his aorta.
He lifts his shirt up and shows off his badge of honour - the scar on his back.
It was stressful and he was in extreme pain, Wellaway says.
After more than 10 weeks, Shay was discharged from hospital on February 24, but he still couldn't sit properly making the drive home a long one.
"Driving home was a nightmare. Every corner was sore for him.
" I had pillows wrapped around his body. He had pain medication."
Back in Oakura, Shay chilled out at home as just getting him to the car was a nightmare, Wellaway says.
Over time he started to regain some movement, enough to allow him to get around the house if he used his crutches and leaned on his mum.
A few weeks later he started to get more strength in his right foot and was able to hold it up without the brace.
He was also having more physio at Taranaki Base Hospital.
Six weeks after he returned from Auckland, Shay threw away the crutches and went to school for a few hours a day.
He has since been granted more than $700 from the Halberg Trust to pay for a personal trainer at Cityfitness gym to help with his rehab.
Shay's walking is nearly back to normal, but he admits he did fall over a few times.
"I just got up and put a plaster on."
There is still a wee way to go, but there has been improvement in the nerves in his leg, Wellaway says.
"Now he might scratch himself, but not feel it. If you touch him with a pin or cotton bud, he might not be able to tell the difference. Or between hot and cold."
And he still has weird sensations in his left leg, Wellaway says.
"He's very brave. He can live a normal life now. I'm very proud of him."
Taranaki Daily News