Jeff Jenkins was at the finish line of a long hardship filled with determination and sacrifice. After a decade of study to become a podiatric surgeon and a few months into practice, the 38-year-old Manly resident received a harrowing diagnosis – motor neurone disease.
“The comment by people around me has been how unfair it is that you spent ten-plus years studying and you finally did your surgery and now, you can’t practice. But I don’t see that way,” Jeff told Manly Observer in a faded voice as the words staggered up his now weakened throat muscles out his lips.
“I think it’s outrageously unfair, it’s horrible,” Sarah, Jeff’s wife, added, sitting close by his side as she has since the diagnosis… “Because it was like an enormous sacrifice, both financially, time and just like, mental capacity.”
“It’s terrible timing,” he agreed. “But I wouldn’t change it, because without that ten years of pushing myself, testing our relationship, we would not have the resilience to deal with what we’re going through now.”
Motor neurone disease (MND) is a condition that affects nerve cells called ‘motor neurons’, which carry messages from the brain to operate the body’s movements. The disease causes them to die, weakening the muscles to the point of paralysis. The average life expectancy is 2 – 3 years.
Jeff, his wife and two young boys, Rome (5) and Iro (2) had a perfectly happy life up until August this year. Around this time, the Manly resident came down with an illness, Graves disease, a disorder he’s previously had that affects the thyroid. However, as aforementioned, the final result was much more sinister.
Unfortunately around the same time, Sarah’s work was dealing out redundancies and she was one of them.
In about the space of a month, Sarah had lost her job and Jeff’s medical license was revoked, all while needing to process the news of a terminal illness.
“The timing is just ridiculous. Like it is, it’s comical…it’s just so ridiculous. We’ve just worked so hard for so long,” Sarah said, seemingly still in disbelief of their situation.
“We have had the conversation, what would we change?
“There really isn’t anything. It was funny, because, one of the few things that we could come up with is we wish we went to the Ed Sheeran concert.”
Kindred Spirits Trump The Withered Body
Jeff and Sarah have been together for 17 years. As mentioned, the past decade has not been easy, raising kids while Jeff pursued his studies, sometimes abroad – but, as they sit on their couch, evidence of joy is decorated across their cosy Manly apartment as memories are framed on every mantle and various children’s toys are stuffed into corners.
Friends and family vouch for their togetherness, creating a GoFundMe for the couple, and boasting their love in the description.
“Their connection was immediate – love at first sight, statistically improbable, hopelessly undeniable, the kind of relationship you’d envy if you didn’t love them both so much,” the GoFundMe read.
And their focus on what they have now in each other and their family seems to be the prominent motivation to push forward, rather than what they have to lose.
“We made a very conscious and intentional decision very early on, within maybe 24 hours of getting the diagnosis that we would value this time and respect the time by showing as much and feeling as much happiness every day, strengthening our relationships, our love,” Jeff shared.
“I said to Sarah the other month our relationship is by far the most beautiful thing to ever happen to me.”
Curious to see how this love spawned (asking for a friend..) we inquired where the couple first met – and as so many great love stories begin and probably end, it was on the dance floor of Cargo Bar, Darling Harbour.
Sarah was competing for the attention of Jeff from another girl who was in a similar polka dot attire, and unfortunately losing, due to the adversary’s drunken, ambitious state. However, it was she who won favour when she messaged him the next day.
It was a ‘long-distance’ relationship of sorts with Sarah being from the insular peninsula of Avalon and Jeff out west in Penrith, with the polka dot persuader admitting it was her partner who did most of the driving.
But, the favour is now returned as Sarah will travel to the ends of the earth to help her husband in the most frightening time of his life.
“I said, would you still rather be in this situation [rather than a sudden death]? And Jeff said, every single day, I will always choose this over an alternative, and it just provided me with so much comfort, for selfish reasons,” she said.
“It actually somehow could be worse. And he’s still here. And I remind myself that every day, when I get into bed, I’m just like, we’re safe, and he’s here, and he’s with his children.”
How Does Motor Neurone Disease Come About?
Genetic inheritance is responsible for 15 per cent of MND cases, the majority of cases are widely unknown.
Unfortunately, contrary to popular belief, the disease is no longer associated with the old, frail and ill. In fact, around half of people with MND are diagnosed under the age of 60. It is also more common than people think with 1 in 300 Australians at a lifetime risk of the disease by the age of 85.
Even now, two people will be diagnosed while another two will die from MND every day with around 2,688 Australians living with the condition at any given time.
Jeff pursued professional soccer in his youth and participated in 100km ultra-marathons in the present. He was the poster boy for fitness, which surprisingly could’ve been what made him a candidate for the disease.
“When I was being diagnosed they asked about my sport and background, how often I trained, what type of fields I trained on, and what type of sport,” Jeff said.
“There’s apparently some inconclusive data that there’s greater prevalence in professional sporting athletes, NFL players apparently have an increase in risk measures.”
“The friends that we have with MND, played soccer, so is it head knocks?” Sarah added, “Or could it be the sprays on the grass as another thing? And there’s a lot of research that suggests that.”
Although Sarah admits this to be only speculation, exposure to toxins and chemicals in the environment is a medically accepted theory to contribute to the disease.
A 2022 New Zealand motor neuron disease case-control paper concluded that the study adds to the evidence that pesticides, especially insecticides, fungicides, and fumigants, are risk factors for MND.
Other theories of factors that could potentially contribute to the disease are viral infection, immune-related damage and premature ageing of motor neurons.
It is important to keep in mind most of these theories are, at the moment, exactly that. There is no concluding evidence linking any of these external factors to the disease.
Ironically, Jeff has said that his time as an athlete has helped him progress mentally through this impossible time in his life.
“Considering the situation, mindset, perspective, I’m doing real development, and that’s a huge part to do with, I think, over a long, long period of my life, pushing myself voluntarily, pushing my body and testing my mind and my body directly.”
Leaving A Legacy
One would probably guess that the most terrifying time in a person’s life would be receiving a terminal diagnosis. For Jeff and Sarah, it was waiting to see if the results for the disease were genetic. If this was the case, it could be possible for their kids to inherit the MND.
“The most horrible period…it was very bad,” Sarah choked, holding back her tears at the mere thought, “I can’t explain how terrifying it was thinking, like, yeah, they could have this too.”
Fortunately, the tests returned clearing genetics from the board of potential causes.
The couple now focus on leaving a legacy for their two little boys Rome and Iro.
“Iro is obviously a bit young, but he’s full of life.” Jeff explained, “Rome is a beautiful soul you can see his empathy at a really young age. When he comes across bugs he wants to make sure they don’t get hurt.”
“He’s been so supportive with Jeff,” Sarah added.
“He knows,” Jeff remorsed.
He definitely knows,” Sarah continued. “He overcompensates and tries to be really sweet by saying, ‘Daddy, you’re so strong’ when Jeff’s unable to do this task to the fullest and he’s like, ‘You’re just so strong’, it’s really sweet.”
Although Jeff’s body is failing, he wants his kids to remember that true strength is shown from within the mind and out through their actions.
“The most important thing is for me to keep showing up every day, showing them that even through a hardship that you get up, you maintain your good character and good integrity, and you maintain your self-discipline, keep having a positive impact on those, the people around you, in the world around you.”
This interview took place on Christmas Eve and although the couple admit to having their “shit days” among the positivity they manifest, the next day was expected to be great.
The family planned to travel to see Jeff’s parents in Penrith. His mother doing everything she can to make things better, providing the couple with traditional Chinese herbal plants and removing superstitious white furniture from their apartment.
But she’s not the only one chipping in. Friends and family created a GoFundMe for the Jenkins. With coaches for wellness and exercise, medication costing around $700 a month, relocation of their apartment when Jeff needs a wheelchair and travel to make lasting memories, the expenses add up.
Jeff and Sarah were reluctant to agree to the donation page and are known in their community as generous people. Jeff was an avid member of the Vipers Running Club, and the two would volunteer at local beach clean-ups and at Lifeline.
This generosity was seen and reciprocated as the GoFundMe raised over $120,000 in just eight days.
“It’s insane. That’s a phenomenal degree of kindness. How people open, open their hearts like it’s wild,” Jeff said.
“All of the love that you’ve given out to the world is coming back to you,” Sarah said.
Of course, the couple did not want this story to focus on the GoFundMe – in fact, they were only made aware the donations had jumped another 20K when we shared the information during the interview – instead, they want to use the spotlight to raise awareness.
Gift Yourself The Peace Of Mind
As previously mentioned motor neurone disease is no longer very uncommon – young, athletic people are becoming increasingly more likely to receive the disease.
There isn’t a cure for MND, but getting a diagnosis early can give you a head start in preparation and treatment. Jeff suggests being pragmatic if you’re feeling unusual.
“Don’t ignore things if you’re feeling symptoms that are odd regardless of whether they’re neurological or not… go get yourself checked out, there’s no harm in coming to your GP,” Jeff shared, sitting with half the strength he once had.
“We want to raise awareness that this is no longer a rare disease that affects only the people who are ill or frail or old. I was none of those.
“I guess, the direction of energy and my new purpose now is a focus on my family and having a good life as much as possible, and being grateful for everything that we have. But now, it is to try to give back in that area and raise as much awareness and funds for research.”
If you would like to donate to the Jenkin family’s GoFundMe you can do so here.
Improve your understanding of the disease here.
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Listen to the interview:
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