My husband of 5 months went to bed with a headache and woke up having a seizure – doctors gave him 5% chance of living
Just before bed one night in 2019, Jake, then 27, complained of a headache, nothing Cami, 23 at the time, thought much of.
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The couple went to sleep as normal at their home in Chicago, and both hoped it would pass by morning.
But at 4am on October 1, Cami woke to find Jake having a seizure right beside her in bed.
'I called 911 immediately. It was surreal, almost like watching someone else's life unravel,' said Cami, now 28.
'One moment we were planning our future, and the next I was rushing my 27-year-old husband to hospital without knowing if he'd survive.'
What started as a simple headache had spiralled into a full-blown medical emergency overnight.
By the time Jake was admitted, doctors were completely baffled.
'He didn't just have a seizure,' said Cami. 'There was also swelling on his brain, and that really scared everyone.'
Medics initially suspected a severe viral or bacterial infection and ran urgent tests for everything from meningitis to West Nile virus.
'They told me they were checking for all kinds of infections,' she said.
'But every single test came back negative. It was like watching them search in the dark while Jake got worse.'
With no clear answers and Jake's condition deteriorating rapidly, doctors prepared Cami for the worst.
'That's when they gave me the five per cent survival rate,' she says.
'They assumed it had to be some virus they just couldn't identify, but they weren't even considering anything beyond that.
'I was 22, sitting there, trying to process that my husband, who had been healthy just hours earlier, might not make it through the night.'
But Jake, now 32, defied the odds and was discharged from hospital just two weeks later.
However, the nightmare was far from over, as no one could explain what had happened or why.
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'We went home with no diagnosis, just this overwhelming sense of fear mixed with relief,' said Cami.
During the hospital stay, one resident doctor had mentioned MELAS, a rare mitochondrial disorder that usually appears in childhood.
At 27, Jake didn't fit the profile so most doctors brushed it off, but the couple agreed to genetic testing, just in case.
Then, at the end of 2019, they got the call that would change everything: Jake tested positive for MELAS - Mitochondrial Encephalomyopathy, Lactic Acidosis, and Stroke-like Episodes.
'It felt like someone had pulled the rug from under our lives,' Cami said.
'We had no idea what MELAS even was, and suddenly it became the defining factor in every decision we made.'
MELAS is a rare, incurable genetic disorder that affects the mitochondria, organelles responsible for producing energy in the cells.
Loss of youth
For Jake, a large portion of those mitochondria simply don't work.
'It means his body can't generate enough energy,' Cami said.
'He can look fine on the outside, but inside his cells are starving.'
The diagnosis forced them to overhaul every part of their life.
Jake had to leave his position as an attorney and wine date nights stopped.
He began a strict low-stress lifestyle, new medications, and a specialist diet to avoid triggering further episodes.
'We were in our 20s, and suddenly everything was about survival,' said Cami.
'The hardest part wasn't just the physical toll, it was the loss of that youthful certainty.
'That sense that the future was ours.' Looking back, Cami believes that moment reflects a wider issue.
'Mitochondrial diseases like MELAS are so often overlooked, especially in adults.
"If that one resident hadn't mentioned it weeks later, we might never have found out.'
'They were convinced it was some unknown infection they couldn't identify,' said Cami.
'Mitochondrial disease wasn't even on their radar," she added.
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The experience highlighted just how easily rare conditions like MELAS are missed or misdiagnosed, especially in adults.
In January and February 2020, Jake was back in hospital with stroke-like episodes, a common but terrifying complication of MELAS.
'Each time, I wondered if this would be the one that takes something from us permanently,' said Cami.
But Jake never gave up. In 2021, he returned to university and earned a master's degree in education.
They moved to Arizona, and he started working as a teacher.
'Starting all over again'
For the first time since his diagnosis, it felt like things were settling.
Then, in October 2022, they bought their first home. 'We were so proud,' Cami recalled.
'It felt like we were building something solid again.'
But just one week after moving in, Jake suffered a major stroke that impaired his speech.
'I can't put into words what it's like to watch the person you love struggle to speak,' she says.
'I knew he was still Jake, but I also knew we were starting all over again.'
It took Jake two years of recovery and rehabilitation to regain his speech and strength.
Today he's back working as an attorney, and he and Cami now share their story on TikTok to raise awareness of MELAS and support others navigating chronic illness.
Their TikTok page, has become a place of education, vulnerability, and hope.
In one emotional clip, Jake thanked viewers for their support.
'We didn't expect this kind of response, and we're genuinely grateful,' he said.
'It's been incredibly hard to come to terms with having MELAS. Every day is a balancing act, managing my health while trying to live a full life.'
What is MELAS syndrome?
MELAS syndrome is a rare genetic condition that affects how the body produces energy.
The name stands for mitochondrial encephalomyopathy, lactic acidosis, and stroke-like episodes.
It's caused by faults in mitochondrial DNA, the tiny energy factories inside cells, which are passed down from the mother.
The condition can lead to stroke-like episodes, seizures, memory loss, dementia, muscle weakness, hearing loss, and short stature.
Symptoms often appear after normal early childhood development and can also include frequent headaches, learning difficulties, and nerve damage.
Doctors usually diagnose MELAS using brain scans that show unusual stroke-like damage, blood tests revealing high lactic acid levels, and muscle biopsies showing signs called 'ragged red fibers.'
There's no cure, but treatment helps manage individual symptoms and improve quality of life. Treatment varies between people depending on what their symptoms are.
Source: National Orgainsation for Rare Disorders
'You never know what's coming next'
The couple frequently answer questions from followers, especially about MELAS being hereditary. 'It is maternally inherited,' says Cami explained.
'But we've been told any children we may have won't be affected.'
More than anything, Cami and Jake want others in similar situations, particularly young couples, to know they're not alone.
'If your partner has a medical condition, you learn quickly that love is more than romance," she said.
"It's about being in the trenches together."
"Love so hard," she added.
"Never go to bed angry. Be grateful, even on the hard days. Because you never know what's coming next.'
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