I was just 38 when I noticed a worrying change in my body. I had done everything right – now I can’t even tie my shoelaces or put deodorant on

Jeffrey Jenkins, a 38-year-old aspiring surgeon, dedicated his life to medicine – but now his world has come crashing down with a devastating diagnosis.

The loving husband and father-of-two had been managing Graves’ disease, an autoimmune condition that affects the thyroid, for decades.

But in mid-2024, his symptoms began to worsen in ways that no one could have anticipated – only to result in a motor neurone disease (MND) diagnosis which has no cure and a life expectancy of two years.

Speaking to FEMAIL, Jeffrey’s wife, Sarah, who has been with her husband for 17 years, recalled the moment they were handed the heart-wrenching news.

‘Our lives were turned upside down by the stress of Jeff’s studies. He was exhausted – working all day and studying all night. Maybe if everything wasn’t happening at once, we would’ve caught it earlier.’

‘It started slowly,’ Daye Moffitt, Jeffrey’s sister-in-law, said. ‘Jeff began noticing hand tremors, which were particularly alarming because of his profession.’

As his condition progressed, his once steady hands weakened, and muscle twitching – on his arms – became impossible to ignore.

Despite his best efforts, Jeffrey’s strength deteriorated to the point where he could no longer lift his arms to perform basic tasks like applying deodorant or fasten buttons.

‘We assumed, just like his specialists, that this was all related to his thyroid,’ Daye explained.

Under medical advice, Jeffrey underwent surgery to remove his thyroid, a major procedure his family hoped would improve his condition – but his symptoms only worsened.

It wasn’t until a series of tests that the truth emerged: Jeffrey had motor neurone disease (MND).

Sarah said, ‘After the surgery, Jeff kept having symptoms that didn’t align with what we knew about his disease. We called up specialists demanding a follow up meeting – both of us were really worried.

‘The panic really set in. I told Jeff I didn’t care what anyone said – we were going to the hospital and we had to get this looked at. We couldn’t wait any longer.’

A specialist then referred Jeffrey to St Vincent’s Hospital where he underwent ‘every test under the sun’.

Sarah said, ‘We were very, very scared. We have two young children. Jeff stayed at the hospital overnight just researching his symptoms online – and that’s when he knew.’

The mum said her friends and family tried to give them hope and reassurance, but they knew deep down that their lives would never be the same.

‘We didn’t know much about MND. You hear about Stephen Hawking, but it feels so rare, especially for someone as young as Jeffrey,’ said his sister-in-law.

The diagnosis process was gruelling.

‘There’s no definitive test for MND, so doctors had to rule out everything else – like brain tumours and other neurological disorders.

‘Every time a test came back negative, we’d celebrate, thinking it was good news. But in the end, when they told us it was MND, it felt like the ground was pulled out from under us.’

With two young boys to care for, the family rallied around Sarah, offering support as she grappled with the unimaginable as Jeffrey’s condition continues to worsen.

Jeffrey used to be a podiatrist, but he spent the last decade studying to become a podiatric surgeon.

He worked tirelessly, often well into the night, and lived a frugal life in the meanwhile.

Jeffrey and Sarah sacrificed lots of luxuries to help him achieve his goal.

It felt like a cruel twist of fate when Jeffrey was diagnosed shortly after fulfilling his lifelong dream of becoming a surgeon. 

‘It felt like a punch in the gut,’ Daye shared. ‘He’d done everything right – worked so hard, saved, and then just as his dream became reality, this happens.

‘His hands are curled up; he can’t lift his arms. My sister has to help him with everything now,’ she revealed.

The double blow of living with Graves’ disease and now MND has left the family questioning how such cruel circumstances could align.

‘How does someone already managing an autoimmune condition end up with this as well? It just feels so unfair.’

Motor neurone disease is a rare and cruel illness, progressively robbing sufferers of their ability to move, speak, and eventually breathe.

For Jeffrey, who once held the promise of bettering lives, the diagnosis has been life-altering.

‘None of us will ever be the same,’ said the relative. ‘We’re still in shock, trying to come to terms with how this has happened.’

Jeffrey’s journey with MND has been rapid and unforgiving, but even as his body fails him, his spirit remains unbroken.

Sarah revealed that Jeff walked out of the meeting room and said he was ‘at peace’ with the diagnosis. 

‘Jeff’s been the strongest out of all of us,’ Daye shared, her voice thick with emotion. 

‘He’s handled this diagnosis with such stoic grace. I’ve always loved and respected him, but the way he’s dealt with everything – never complaining, keeping his sense of humour – is truly remarkable.’

Despite the rapid progression of his condition, Jeffrey remains positive, keeping his dark moments to himself.

‘The degeneration has happened very rapidly since the diagnosis, so it’s just really confronting the rate at which things change and go downhill. Even a month makes so much difference.

‘It was so hard to watch, especially because he was so articulate before – very commanding and sincere. You could hear it in his voice, his ability to communicate was being rapidly stolen from him.’ 

What is motor neurone disease? 

Motor neurone disease (MND) is a devastating neurological disorder that progressively damages motor neurones – the nerve cells responsible for controlling muscles essential for movement, speech, swallowing, and breathing.

As these neurones deteriorate, individuals experience escalating muscle weakness, leading to paralysis and, ultimately, respiratory failure.

The onset of MND is often subtle, with early symptoms including stumbling due to leg weakness, difficulty gripping objects, and slurred speech.

As the disease advances, these impairments intensify, severely compromising mobility and quality of life.

Tragically, there is no cure for MND, and treatment options are limited to managing symptoms and attempting to slow progression.

The average life expectancy following diagnosis is typically between two to five years, though some individuals may live longer.

In Australia, organisations like MND Australia provide support and advocate for increased research funding, hoping to one day find a cure for this devastating condition.

Daye shared that Jeffrey’s family and friends have become constant fixtures at their home, helping out in any way possible.

‘We spend so much time over there now, helping out with the kids because they’re so young,’ she said.

‘Jeffrey’s still hugely present in their lives, but he can’t lift them up anymore, do any of those physical things that a father should be able to do.

‘The constant muscle twitching and inability to lift his arms is difficult to watch, it’s almost as if his body is physically torturing him, reminding him that it’s against him right now.’

Despite this, Jeffrey never complains.

‘He can still walk, and we’re thankful for that, but every day is a struggle. It’s the little things he used to do – putting deodorant on, tying shoelaces – that are now impossible.’

The uncertainty of MND is perhaps the most heartbreaking aspect of this diagnosis. 

‘We just don’t know how long we’ll have him,’ said Daye, tears choking her voice. 

‘We just want him with us for as long as possible. It’s so unfair, this disease. Medicine can do so much – why can’t we cure this?’

Jeffrey and Sarah’s children are still very young – two and five – but their response to the diagnosis has been heartbreaking, with family stating that it’s a struggle to explain such a complex  illness to kids who just want their father to be the same, strong figure they know and love.

For the two-year-old, it’s been especially tough.

‘He’s too little to understand,’ shared Daye. ‘We can’t explain it to him. He’s just not old enough to grasp what’s happening.’

But for Jeffrey’s five-year-old son, Rome, the situation has been more noticeable. 

‘He’s really switched on for his age, very sensitive,’ Daye explained.

The family turned to a psychologist for guidance, recognising that they couldn’t handle this on their own.

Sarah shared, ‘Our parenting philosophy has always been a level of honesty in an age-appropriate way.

‘It was important for us not to keep the truth from Rome or give him false hope about his father’s future.

‘So many little things changed at home – which is why it was always going to be obvious that Jeff was unwell.

‘He stopped being able to hold the kids and run around with them.

‘We wanted our son to have the opportunity and knowledge so that he can control the time he has left with his dad and not have any regrets further down the track.’

Sarah said the conversation happened ‘organically’ while the family was on holiday.

‘Rome is a huge empath, and he just came up to me one day and asked: ‘Why aren’t daddy’s legs working?’

‘It’s when I told him his daddy was very sick. That there was big sick and little sick, and that Jeff was big sick – which means the doctors will try and help him as much as they can, but they’re not going to be able to make him completely better.’

Sarah said her son was ‘accepting’ of the fact and asked her some questions.

‘After that he just looked at me and went: ‘how are you feeling about this?’

‘It was very sweet, but I felt so sad. I did get upset.

‘My son then asked me what we could do about it, and I told him we just had to love Jeffrey really hard.’

Rome then nodded and ran off to Jeffrey, who was sitting in the pool and hugged him.

‘We couldn’t keep it from him any longer – he had to understand that Jeff’s very sick, that the doctors are doing everything they can, but he’s going to get weaker.’

Daye added: ‘He noticed right away that his dad couldn’t speak properly anymore.

‘He didn’t want to make his dad feel bad, so he just kept saying, ‘Pardon, Daddy, pardon?’

Even in the midst of this heartache, Rome showed remarkable empathy.

‘When we told him that his dad’s going to get weaker, he said, ‘Maybe Daddy can do some ninja practice and get better’,’ Daye recalled.

‘It was so sweet, and also so heartbreaking – he just believes that if anyone can get better, it would be his daddy. It’s just so unfair.’

The impact of the diagnosis on Rome’s mother has been just as profound.

‘My sister, she’s usually such a happy, laughing, smiling girl,’ Daye shared. ‘But since Jeff’s diagnosis, she’s been devastated, always in tears.’

It’s clear to the family that Rome picked up on the change in his mother’s mood, sensing that something wasn’t right in their world.

‘It’s been so hard for her to hold it all together. It’s really taken its toll on her.’

As the family grapples with the reality of Jeffrey’s disease, they focus on quality over quantity.

‘We just want as much time with him as possible,’ Daye said. ‘We’re striving for quality moments now – making memories, cherishing every second. It’s all we can do.’

The family is also grappling with everyday problems in the wake of Jeffrey’s diagnosis.

‘We live in a little two-bedroom apartment up the stairs – we’ll have to move soon. We’re both overwhelmed by what that will look like considering the rental market and cost of living crisis.

‘Another thing is that our days have become much slower. We have to work on building a strong mindset because it’s the only thing that’s going to get us through.

‘Jeff is committed to doing everything he can to keep his mental health in check – he’s been going to the gym every day and going to the sauna. He meditates and practices mindfulness.

‘In the beginning, he really wanted to sit in the sunrise and see it every morning he could, but it’s hard for him to get up now.’

What is Graves’ disease? 

According to Healthdirect Australia, Graves’ disease is an autoimmune disorder that leads to hyperthyroidism, where the thyroid gland overproduces hormones. 

Symptoms often include anxiety, irritability, tremors, a racing heart, heat intolerance, sweating, fatigue, and weight loss.

Early diagnosis is crucial to prevent complications affecting the heart, bones, and eyes.

Healthcare providers typically confirm Graves’ disease through blood tests measuring thyroid hormone levels, and teatment options include medications to manage hormone production, and in some cases, surgery.

While the exact cause remains unclear, a family history of autoimmune conditions may increase susceptibility.

Jeffrey and Sarah are passionate about raising awareness for motor neurone disease, and believe that early detection is crucial, even though it doesn’t necessarily improve survival rates significantly.

‘It’s really easy to dismiss the symptoms – people might just think they’re stressed or anxious, and not consider the possibility of something like MND,’ Daye said.

Sarah echoed this sentiment, emphasising the importance of recognising the symptoms early, because the earlier you get diagnosed, the better chance there is to slow down the degeneration.

Jeffrey’s story is a reminder of the cruel unpredictability of MND and the urgent need for research into better treatments and, ultimately, a cure.

Despite the darkness that surrounds him, Jeffrey’s strength is an inspiration to those who love him.

But the thought of a world without him, of missing out on his laughter, his voice, his presence – this is the heartbreaking reality his family faces each day.

As they fight to keep hope alive, they are also left grappling with the inevitability of what lies ahead – a life without Jeffrey’s love.

You can donate to Jeffrey’s GoFundMe page here.