WARRIOR TO THE END
He tackled motor neurone disease with the same determination that drove him to rugby stardom
IT WAS a sunny Easter weekend and Joost van der Westhuizen and a longtime doctor friend were clowning around in one of the swimming pools at the luxury Sun City resort in North West.
During their horseplay Dr Henry Kelbrick suspected something was wrong: Joost’s right arm seemed much weaker than his left. The doctor was unsettled by it but didn’t say anything at first. Then he noticed Joost was slurring slightly and realised something serious was going on.
After they returned home Henry accompanied the once superfit Bok scrumhalf to an appointment with Pretoria neurologist Dr Pieter Kritzinger. The specialist confirmed Henry’s suspicions and a provisional diagnosis was made: incur-incurable, degenerative motor neurone disease (MND). Joost was 40.
The disease interferes with the brain’s signals to the voluntary muscles and later the involuntary muscles too. It usually begins in the arms and legs and eventually all the muscles in the body stop working. A second neurologist confirmed the devastating diagnosis.
That week in May 2011 changed Joost’s life for ever. It was the start of a battle he’d fight for six years, at first determined he’d find a way to beat it but later making peace with the debilitating effects on his body.
HOPING the doctors were wrong, Joost flew to America two months after the diagnosis in search of answers. The news wasn’t good: MND specialist Dr Erik Pioro of Cleveland, Ohio, confirmed Joost had amyotrophic lateral sclerosis (ALS), the most common form of deadly MND.
He had to accept he’d eventually lose all muscle function, become paralysed and die.
But the biggest shock was yet to come: he probably had two years left to live. At most he’d have five.
Joost decided to fight tooth and nail to be able to see his children, Jordan (now 13) and Kylie (now 10), grow up.
In August 2011 he announced at a news conference that, with the help of Dr Jody Pearl, his then neurologist and leader of his medical team, he was receiving experimental stem-cell treatment to try to slow his deterioration.
Some of the signs of the disease were already obvious – his face looked puffy, his mouth was slightly skew and he slurred when he spoke.
By the time YOU spoke to him in February 2012 he looked much older than his 41 years. His hands were knobbly, already showing signs of deterioration, and he found it difficult to get out of a car.
In July that year, when he attended a glittering charity event, it was clear he was walking with difficulty – one of his legs lagged behind. His once firm handshake was limp and he seemed out of breath as he held onto a railing.
Two months later Joost told YOU he wanted to see more of his children. He could still drive himself to the gym and manage some exercise, despite it being painful. Even opening a bottle of medicine was an effort.
He said he’d begun to experiment with Tasmanian goat serum, receiving an injection twice a day in the hope the purified goat’s blood would slow his deterioration.
On 20 February 2013 he turned 42 and in an interview the following
month said, “I should have been dead last year.” He spoke slowly and with difficulty. His arms were noticeably thinner and one of his legs still dragged when he walked, yet he was positive.
But it wasn’t long before his disease progressed to the next stage. By April he needed a walker and a wheelchair, straws for drinking and willing hands to help him to eat.
He could no longer drive and didn’t really go out any more as it made him too tired. The first stage of MND, during which he could still do things for himself, was over.
AFEW months later Joost seemed a little better – there was more flesh on his bones and more colour in his cheeks. In September 2013 he announced he believed he was cured after a month’s treatment by Dr Anton Neethling, a detox specialist from Pretoria. But neurologists slammed Neethling, who has a doctorate in theology, not a medical degree.
By this stage Joost was permanently in a wheelchair and in February 2014 his estranged wife, Amor Vittone (now 44), said it broke her heart to see someone lifting Joost’s arm to help him to greet somebody.
That same month he travelled to the US where he became the first MND sufferer to take part in a new clinical study. During the interview Joost’s speech was often incomprehensible to the untrained ear.
Three years after his diagnosis he was in stage three of the disease. He was grateful he could still “chew, drink, swallow and breathe” but was losing weight by the day. Just months later, he needed full-time care. Someone had to help him bath, dress, eat and drink – that person was his older brother, Pieter.
In October 2014 rugby fans cheered when Joost, dressed in a bionic “miracle suit”, walked out onto the field at Ellis Park in Johannesburg on the day the Springboks beat the All Blacks.
But by March 2015 the hair on his temples was greying, he looked noticeably weaker and his speech was barely comprehensible.
He still wasn’t thinking of dying, he said. When his head dropped forward he forced it up.
In August 2015 he began using a special computer that spoke for him and three months later he flew to London for a four-day reunion with his 1995 Bok teammates.
He still hadn’t given up hope and tried out a so-called miracle medication called GM604. It made him feel a little stronger, he said, and he was swallowing better.
But by June 2016 Joost could no longer lift his head and could hardly move. Four months later, although he could still eat small bits of soft food, he was primarily dependent on a feeding tube.
THEN, last month, came the news that Joost had started using an oxygen machine. He said he used it only when he felt the need, usually at night.
Emaciated and exhausted, he was clearly in the final stage of the disease but he insisted the machine was just an aid and that he was sleeping better at night.
But two weeks later, on 4 February, the J9 Foundation announced Joost had been rushed to the Life Fourways Hospital in Johannesburg and was in a critical condition in the intensive care unit.
Over the following hours his family kept a vigil at his bedside.
Then on 6 February, two weeks before his 46th birthday, he finally succumbed to the debilitating disease that had caused his once-powerful body to waste away.
He’d been told he had five years if he was lucky – he’d made it to almost six.