Stuart Kennedy overcame a uncommon sleep disorder to get a spot at college | Port Lincoln Times

Anne and Neil Kennedy well up as they talk about their youngest son, Stuart, going off to study his dream course at the University of Canberra.

Any parent would be proud of their son’s achievement amid the chaos of the past two years, but for a time they didn’t think Stuart would be able to get out of bed, let alone go on to higher education.

It all began with a virus. In late 2016 when Stuart was in year 7 at Canberra Grammar School he contracted the virus, with the expectation he would shake it off within weeks after some rest.

But the illness persisted. Stuart began sleeping for long periods during daylight hours, even after having a full night’s sleep.

The 2017 school year began with a promise but he soon went downhill, sleeping 16 to 18 hours a day.

A typical day would start with Anne and Neil forcibly waking up Stuart, cajoling him to the breakfast table before he stumbled back to bed for another sleep until lunch or even dinner. After the evening meal, Stuart might use the computer or watch TV before heading back to bed.

Lethargy and brain fog descended from the moment he was woken up.

“I was very sluggish. It took a lot to get out of bed,” he said.

The diagnosis

A sleep study at Canberra Sleep Clinic diagnosed Stuart with idiopathic hypersomnia. The ‘idiopathic’ part of the diagnosis means the cause of his condition was unknown. It was confirmed by a second sleep study in Sydney.

And so began a trial-and-error mission to find a treatment. Some drugs had no impact at all while others – Ritalin and Concerta – appeared to make a difference for a time.

Meanwhile, Stuart missed out on his education from year 8 through to year 10.

“I barely did any schoolwork while I wasn’t medicated for it. I could barely get out of bed let alone, you know, actually be able to do schoolwork,” he said.

Anne and Neil were feeling totally despair as their teenagers, who was supposed to be eating them out of house and home, was barely awake for three meals a day.

“At the height of his affection, with the muscle atrophy he couldn’t stand up. We had to help him stand up and and carry him to the bathroom and things like that,” Neil said.

“We got to a point where we set up a trust so Stuart would earn the interest on that trust that would pay for an institution after we’re gone because we couldn’t see him getting out of bed.”

A 2019 parliamentary inquiry into sleep health found approximately one in five Australians were estimated to be by a major sleep disorder, with obstructive sleep apnea and insomnia being the most prevalent conditions.

Canberra Sleep Clinic director Stuart Miller said young adults often struggled with conditions of excessive sleepiness. A diagnosis was often delayed.

“The first step is to know that adolescents might sleep up to 10 hours normally, but teenagers sleeping more than 10 hours on a regular basis, you know that’s a warning sign that there’s something wrong and the issue should be investigated,” Dr Miller said.

Dr Miller said patients were referred to his clinic from a general practitioner but it required observant parents and teachers to realize there was a problem.

“There are more young adults in Canberra with these disorders of sleepiness than you would really imagine. There’s probably a couple of 100 who’ve got narcolepsy and perhaps another 100 that have the sort of lesser-known condition of idiopathic hypersomnia,” he said .

Stuart Kennedy, pictured with parents Neil and Anne, graduated from year 12 at Canberra Grammar School in 2021 where he was a boarding student. Picture: Dion Georgopoulos

The breakthrough

The Kennedys were told Stuart might grow out of the condition as his hormones settled down, but there was nothing further that could be done.

Neil began searching the world for an answer and found two clinics that specialized in idiopathic hypersomnia. In a very phone call with Emory University Sleep Clinic in Atlanta, Georgia, in the United States, Neil explained Stuart’s situation to Dr David Rye.

Stuart seemed like a good candidate for a trial of a drug called Flumazenil, which is usually used by emergency departments in Australia as an injection to treat patients who had overdosed on sleeping tablets.

Dr Miller got permission to import Flumazenil as a powder and had a chemist in Adelaide to create lozenges containing the drug for Stuart to dissolve under his tongue each morning and evening.

“For first few days flumazenil wasn’t really doing much. And then one day I was able to get up,” Stuart said.

“I didn’t feel lethargic, sluggish. The headache was still there, but the brain fog was gone. I felt somewhat normal again.”

After five days of taking the lozenges, Stuart had woken up before his parents had breakfast, did some chores and was playing with their old English Sheepdog in the backyard.

“I looked up and he just said to me, ‘Dad, I can think. No brain fog. I’m not tired’. I just burst into tears,” Neil said.

“This is after two-and-a-half years laying in bed not being able to move.”

Rebuilding a life

Stuart came back to school for half-days in term 3 of year 10, but he was still napping in the afternoon.

Specialists advised he’d developed a habit of sleeping at home and so he was given the option of joining the army or attending boarding school.

Anne was skeptical boarding school would make a difference. Nevertheless he was enrolled at the Canberra Grammar boarding house.

Head of boys’ boarding Kiel Brown welcomed Stuart into the boarding house and treated him like any other boarder daunted by the new processes of rising , room checks and communal meals.

“We hope that maybe Stuart felt that warmth, and that wants to be part of our community. And although it probably didn’t make the mornings easier … we hope that just by having a community in a place where he could feel connected what I suppose the first step,” Mr Brown said.

Stuart Kennedy Overcame A Uncommon Sleep Disorder To Get A Spot At College |  Port Lincoln Times' boarding Kiel Brown with Neil, Stuart and Anne Kennedy.  Picture: Dion Georgopoulos

Canberra Grammar School head of boys’ boarding Kiel Brown with Neil, Stuart and Anne Kennedy. Picture: Dion Georgopoulos

At the end of year 10 he was getting Cs and Ds on his report card. Embarking on the HSC courses in year 11 he had three years of foundational skills and knowledge to catch up on.

He got a lot of help from his teachers, the learning support officer, tutors in the boarding house and his peers. In year 11 and 12 he slowly but steadily increased his rankings. For his area of ‚Äč‚Äčinterest, software design, he improved his rank from 11th out of 13 to 6th.

“I’m a bit emotional about it. We were in total despair. As I said, getting him back to school would have been a victory. And then these guys [at Canberra Grammar] come in and threw their weight behind Stuart,” Neil said.

The hard work meant Stuart got an unconditional offer to study software engineering at the University of Canberra through the school recommendation scheme.

“It was such a relief. Mainly because I got it the day I had my software exam. It put a lot of pressure off,” he said.

Stuart will be trading his boarding school dorm for a room at a university residence, hoping the new -rising routines will stick as he begins the next phase of life.

His parents couldn’t be more proud.

“We now have a light at the end of the tunnel whereas a couple of years ago we didn’t know what the future would hold for Stuart, or for us,” Anne said.

“How do we feel? He’s going to uni. It’s just amazing,” Neil said.

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This story How this teen got his life back after being bedridden 18 hours a day first appeared on The Canberra Times.

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