We all know someone who is “one in a million”, right? That's a “very special person”, according to the online Cambridge Dictionary’s definition. But what about those humans who are statistically one in a million?
They’re people who have experienced something so extraordinary that you’d have to line up hundreds of thousands of others to show the rarity of it happening to just one person. What are the stories – and who are the faces – behind that number?
Whether it’s being the one in a ‘million’ (roughly the population of Cyprus or Mauritius), one in 11 million (think Greece or Belgium), or one in 200 million (Pakistan or Brazil), these three people have an extremely unusual story to share…
“I’ve been ill my entire life, but I won’t let it beat me”
Lydia-Jane Bishop, 26, from London
“When I was four weeks old, I started to grow hard, bulbous membranes under my eyelids. My mum tells me that, even when they were removed, they’d grow back larger and deeper. Eye drops and antibiotics didn’t work and, despite referrals to specialists, nobody knew what was wrong.
At 18 months old, Mum took me to a farm to a visit a friend, but within an hour the hay made the membranes swell so much that I lost my sight completely. We rushed back to London, where luckily, professor John Dart at Moorfields Eye Hospital recognised my condition, as he’d seen it once before. I was diagnosed with hypoplasminogenemia – a genetic disorder, affecting around 1.6 in every million people, that causes thick growths of tissue to develop on mucous membranes (such as the eyes, mouth, nose, stomach and respiratory tract).
My family were relieved that I finally had a diagnosis, but were told there were few treatment options – and no cure. Because it’s so rare, little was known about how it would develop or if it would cause permanent damage.
My mum continued to research the disease, but couldn’t find anything useful. I had to apply stronger eye drops – known as heparin drops – every hour until I was five years old. When the membranes (known as ‘ligneous lesions’) moved from my eyes to my gums, my dentist was baffled. I had specialist cleaning every three months, but it didn’t ease the mouth pain, which was sharp and throbbing, like a constant hideous ulcer.
When I hit adolescence, my genital tract became infested by the disease. My periods were agony and I felt too weak to move because the bleeding was so heavy. By the time I reached 19, the ligneous lesions affected my nose, tonsils, vocal chords, lungs, and blocked my airways so much that sometimes I struggled to breathe. I developed asthma and started talking in a whisper because I was always losing my voice. I was working in sales at the time, taking unpaid sick leave. I received written warnings because I couldn’t keep up.
That’s when my mum found a researcher based in the USA, who was studying treatments for hypoplasminogenemia. After discussing it together, she signed me up for a clinical trial to test a new drug, which aims to prevent the recurrence of lesions. I couldn’t imagine a pain-free life, but I could tell my mum was desperate, and her hope gave me hope.
In 2015, I quit my job and travelled to Indiana with my mum to take part in the three-month trial, which involved self-injecting every three days. To my total amazement, my symptoms eased immediately: I could see better, my throat felt clearer and I had more energy than I’d ever known. The relief and happiness were indescribable. All I kept thinking was: ‘I can’t believe this is how normal people feel.’
Suffering with a rare disease can make you feel painfully alone, but meeting other sufferers on the trial and sharing our experiences gave me a sense of belonging. Now that I’m home, I continue to self-inject every four days – we got permission as the trial is still ongoing. The problem is the EMA's not licensed it in the UK yet. I know these things have to be tested properly over a long period of time, but the drug has changed my life. I can now work, exercise and go out with my friends – things that any woman in her twenties should be able to enjoy.
My symptoms can return when I’m run down, but I refuse to let this illness beat me. I started a blog to help others suffering with chronic illness. I want to show them – and the rest of the world – that disease doesn’t define you.”
“I was almost killed by lightning in my 20s – twice”
Beth Peterson, 49, from Georgia, USA
“The rain soaked my boots and my heart thumped in my chest as a bolt of lightning split a tree in half just 50 yards away from me. There was no warning except the thick black clouds that filled the sky. Before I could take shelter, a massive flash of light ploughed through me before throwing me back 30 feet on to the concrete ground. It felt like every inch of me was on fire, burning with electricity – killing me. Then, everything was black.
I was 24 years old and a soldier in the army at Fort Benning, Georgia. That night, I was inspecting ammunition at the supply point with one other guard. He tried to bring me round, but it was the paramedics who resuscitated me, even though the lightning – which had struck my feet, shot through my body and out of my mouth and head – had stopped my heart.
Doctors were astonished that I had survived when I arrived at hospital. By then, I was semi-conscious, wondering if I’d been shot or a bomb had exploded. It took hours before I understood what had happened.
I couldn’t speak because my jaw was broken, I couldn’t understand speech because of a severe brain injury, and I couldn’t walk because the blood vessels in my feet had been completely destroyed. I was grateful to be alive, but my life had changed forever.
I had 12 surgeries to rebuild my jaw and my toes were amputated. Slowly, I relearnt to read, write, talk and walk – using crutches at first, then, when I was stronger, my core muscles in my stomach for balance. I felt helpless, but with each sign of recovery – reciting the alphabet, completing basic maths equations – came a glimmer of hope. As well as physical rehabilitation, I was diagnosed with post-traumatic stress disorder (PTSD) and needed to see a psychologist.
Exactly a year to the day that I’d been struck, a storm was brewing outside my house. I was at home because I still couldn’t work. My psychologist had encouraged me to face my fears and not hide indoors during bad weather. So, I plucked up the courage and stepped on to our porch.
Then… I felt it. That same flash of light, that same agonising burning. I was thrown back into the house, where my boyfriend David rushed to my side. Before I lost consciousness, I was sure I was going to die.
Lightning is responsible for more than 4,000 deaths worldwide each year and, apparently, the odds of being struck by lightning in the US is 1 in 700,000 (in the UK its one in 10 million). But I have no idea what they must be for being struck twice and on the same day a year apart - as far as I'm aware, those stats don't exist.
The strike didn’t do as much physical damage as the first, but as I was still in recovery, doctors didn’t know the extent of the damage the second time round. My days were a constant stream of hospital appointments, repeating my rehabilitation. I lived in fear, obsessed with clouds, rain and lightning, and was forever scanning the sky.
Four months after the second strike, I’d built up enough strength to walk using a stick, and David and I decided to get married. The following year we had a son, Casey. After each surgery, each rehab session, they were the beacons of joy pulling me through.
It’s been 25 years and I’m still in pain. It may sound strange, but fellow amputees will understand – the pain never really goes, you just learn to exist alongside it. But rather than focus on the bad stuff, I give talks for other PTSD and chronic pain sufferers. In 2013, I wrote a book about how to use pain to make you stronger.
The strikes might have changed my life irreparably, but they’ve also given my life purpose: to help others.”
“I had no idea I was giving birth to identical triplets”
Becki-Jo Allen, 25, from Liverpool
“The ultrasound jelly was cold as the nurse looked intently at the screen. I was only nine weeks into my pregnancy, but I’d been suffering with a permanent headache and nausea for over a month. My boyfriend and I were excited to grow our little family – we already had a three-year-old daughter – but seconds later, we realised it wasn’t going to be as ‘little’ as we’d planned.
‘There are three heartbeats – you’re having triplets!’ the nurse beamed. I was so shocked I just burst into laughter. I had savings but the practicalities vexed me. ‘Where are we going to get a pram to fit three babies?’ was just one of a thousand questions that spun through my mind. When I told my family that evening, they didn’t believe us – until I held up the scan and tears filled everyone’s eyes. “We’ll work it out together,” they reassured us.
At just 29 weeks into my pregnancy, I started to have contractions. I didn’t go into labour, but doctors warned me it wouldn’t be long and, as they would be premature, the triplets would have to go straight to intensive care so I wouldn’t get to see them straight away.
When I went into labour two weeks later, I tried to keep calm. It was only when I was wheeled into theatre for my caesarean that my whole body began to convulse – I couldn’t contain my terror. ‘What are the chances that they’re all going to be survive?’ I remember panicking.
Roman, Rocco and Rohan were born, each weighing under 4lbs. “I just want to see my boys,” I told my mum, so the nurse took photos of ‘Baby A, Baby B, and Baby C’ in intensive care. I was bowled over with love when I saw the pictures and later, when I saw their three tiny bodies. I wasn’t even scared of the life change for me – I was just sobbing with joy that the boys were ok.
The odds of giving birth to triplets in the UK is about 1 in 4,400, so they were already rare. Doctors told us the boys were non-identical because they were sure they hadn’t shared a placenta and I didn’t think anything of it. But after six weeks, when we were allowed to bring them home, people started stopping us in the street. “They’re so similar! Are they identical?” they’d ask. I could always tell the boys apart – Rohan has a cheek dimple and a birthmark on his leg, while Rocco’s hair crown lies to the right and Roman’s to the left. But when we started getting asked this everyday, I began to wonder.
I got in touch with the Multiple Births Foundation, who told me I could determine if they were identical – known as zygosity determination – via a DNA test. I took cheek swabs and within a month, the results came back. I was shocked to find out the boys really were identical. The odds are estimated to be up to 1 in 200 million.
Being a mum to identical triplets who are about to turn three next month, and training to be a nurse at the same time, is challenging. They fight, climb over the furniture and, like many toddlers, will try to put anything in their mouths! I’m no longer with their dad, but he lives nearby, as do my parents, so I have support.
I’ve joined a Facebook group for mums of identical triplets, and it has made me realise how extraordinary they really are. Yesterday, Rocco bumped his head, but it was Roman who started wailing, saying 'Mummy, my head hurts!' I don’t know if they can feel each other’s pain, but they certainly have an extraordinary bond.
The boys start nursery in September, and I can’t help but wonder about their futures. Will they choose similar careers? Will they always be this close? For now, I’m just enjoying time with my one-of-a-kind boys.
They may be biologically identical, but to me, they couldn’t be more individual.”
This article was update on 2 July 2018 to amend FDA to EDA.