Teenager has no choice but to wake up at 2am every day to combat rare disease
A Scottish teenager following a relentless medication regime is forced to wake up at 2am every day to protect themselves from kidney failure.
At just 15 years old, Morven Hutchison is required to take 22 doses of medication each day to fight the rare disease, cystinosis. It is estimated that one in 200,000 people in the UK have the condition, although only two to three new cases are diagnosed annually.
Morven’s primary medication, mercaptamine, is taken orally every six hours, meaning they wake up in the early hours of each morning to keep this schedule.
Morven’s mum, Alex Hutchison, says: “Morven’s medication regime is very disruptive to their life and causes a lot of stress. It disturbs their sleeping pattern and has a lot of side-effects, including nausea and a sulphur (egg-like) smell that affects breath, skin and sweat glands.
“That can lead to bullying, and the routine of taking the medication itself can be quite isolating. For example, Morven has to go to the first aid room at breaktimes, which pulls them away from their friends.
“We’re excited about current research and thankful for what has already happened, as without medication, Morven’s kidneys would have failed by now. They would have needed dialysis or a transplant between eight and twelve years of age. Instead, they should be in at least their early twenties before a transplant is needed.”
Unexpected diagnosis
Morven was around eight months old when they were diagnosed with cystinosis and Fanconi syndrome – which affects reabsorption in the renal tubules of the kidney.
Alex says: “Most people experience symptoms of weeing or being thirsty all the time, but Morven’s diagnosis came about accidentally when they happened to be unwell with a rash and temperature. Doctors did a blood test which raised concerns about Morven’s glucose levels, and investigations into this led to their diagnosis. It was a real shock to us, especially as first-time parents.
“There was a lot of information and terminology coming at us, and it was a lot to take in all at once. We’ve always tried to make it a less frightening, by focusing on the here and now, rather than what might happen long term.
“With rare diseases, it’s hard to know what to expect, because there is such a small number of similar stories. In our case, we’ve not had the same challenges as some families. Morven didn’t have to have a gastronomy tube fitted and has spent less time in hospital. However, cystinosis has still had a huge impact on our daily lives.
“Sticking to Morven’s mercaptamine is challenging, and other medications they take are also disruptive to their life. For example, their eyedrops need to be kept refrigerated. That can be complicated, especially when you’re travelling. Figuring out how to carry around all the medicines Morven needs is a challenge in itself!”
Morven’s future
It is uncertain how exactly Morven will be affected by their cystinosis as they get older.
Alex says: “When Morven was diagnosed, we were told that their kidneys would fail eventually. I’m still expecting that to happen, although Morven has bucked a lot of trends living with cystinosis. Their kidney function continues to be monitored to make helpful adjustments to their medication. We’ll deal with everything as it crops up and do our best to give Morven more time with her current kidneys.
“We try to lessen the feeling that Morven is ‘ill’ and we hope that will support them to feel capable of achieving what they want in life. Morven is very individual and doesn’t mind standing out from the crowd, which I think is a lovely quality.
“They like being in another world in terms of imagination and creativity. They’re passionate about art, drawing and animation. Morven is also interested in politics and has become a bit of an activist. They are about to sit their exams next year and we’re positive about the future, even though it’s hard to know what will happen.
“Morven’s is one story amongst many, all of which are individual. There are stories which are even more heartbreaking, and I want to acknowledge that. It’s important for researchers, clinicians and families affected by cystinosis to work closely together to find breakthroughs which can transform lives.”
Collectively common: the devastating impact of rare kidney diseases in the UK
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The report shows that people with rare kidney diseases face significant diagnosis delays, inconsistent care and long waits for new treatments, with children in particular left at greater risk of medical, educational, and economic disruption.
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