Words by Lucy Devine
This time three years ago, Amy Broch was basking in newlywed bliss.
Her boyfriend Sean Healey had surprised her with a spontaneous wedding during a trip to New Zealand. Just six weeks pregnant with their daughter Minty, Amy remembers thinking it was one of the happiest moments of her life as Sean whisked her off in a helicopter to say their vows.
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Two months later, the course of Amy and Sean's lives had changed irrevocably. Sean - the CEO of global management firm, AMG - had been diagnosed with amyotrophic lateral sclerosis (also known as ALS and more commonly referred to as motor neurone disease), a neurological condition that affects the brain and nerves.
"In Sean's job, part of his role was a lot of talking, so he was very in tune with his body. One day, he came home and told me that his tongue felt weird," Amy, now 38, tells Tyla.
"In the beginning, I couldn't pick up on it. But he was certain that something was different, that he sounded different. You never expect it to be the worst case scenario, and when Sean first went to the doctor, they thought it was acid reflux. It wasn't.
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"We used to split a lot of our time between America and London, and one day, while I was in the UK - two months pregnant and suffering from hyperemesis gravidarum - and Sean was in Boston, I got a phone call.
"It was Sean. He'd been to an appointment with his doctor and they had told him, very bluntly: 'This is ALS, go home, get your affairs in order'. It was a no hope kind of diagnosis. He was in tears."
Early symptoms of ALS include weakness, stiffness, difficulty walking, swallowing, muscle cramps and twitching, as well as slurred speech. Generally, this is followed by progressive weakness and loss of speech, swallowing, and eventually breathing.
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The average life expectancy for a person with ALS can range from two to five years, although some can live longer with the disease.
"I remember putting down the phone and I was scared to Google, I didn't want to know," Amy continued.
"He had bulbar onset ALS which is the type that starts in your mouth and is the most aggressive form. Eventually, I plucked up the courage to look online, but I had to close the page; it was too hard to read. All I could see were the word 'terminal' and 'no cure'.
"With ALS, they can't tell you how quickly you will progress. All they tell you is to live every day like it's your last.
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"My husband - this strong, capable, caring person - had a fatal disease. I knew I had to be strong for him. Every day I told him: 'Everything's going to be okay, you're gonna' live a long time'. We simply focussed on the baby and took each day at a time."
They spent the next two years exploring treatments, including a trip to Korea where Sean underwent stem cell therapy, as well as a visit to Australia where Sean was given a trial drug. Following his diagnosis, the CEO also set up the Healey Centre for ALS - the largest hospital-based research program in the world.
"I was, and still, am in awe of him," Amy recalls. "It wouldn't be most people's first reaction, but when he was diagnosed, he set up the Healey Center in Massachusetts, raising $40million (£29million). He was so focused, it empowered him and made him feel like he was fighting back.
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"I remember him saying, 'This isn't going to help me, but I hope it helps others in the future'. I fully believe they will find a cure."
Around the same time, Amy, an artist, started creating her art installations at home, something which brought Sean a great amount of joy.
"I was creating these installations at home, and if my husband was having a bad day, it could really change his mood and his outlook. I really believe having that joy gives you the strength to carry on the fight," she said.
And fight Sean did, with Amy explaining her husband was stable for over a year, until sadly, his condition started to deteriorate. In May 2020, as the UK battled through lockdown, Sean sadly passed away at the age of 59.
"In the last six months of his life he went downhill very quickly. He was in a wheelchair, with very little movement and I had to shower him, feed him. He later had a feeding tube fitted because he had lost the ability to swallow," Amy continued.
"He loved being with me and Minty, he was just obsessed with her. But he didn't want to live like that. Taking care of him was a privilege and a tragedy at the same time, I'm 38 and I've experienced something very few people do. I feel untouchable now."
Three years on from the day the couple were married - and on Amy's first Valentine's Day without Sean - the artist has created JOY Bomb London, an interactive, multi-sensory art installation designed to provoke happiness, joy, laughter and self love.
And with the UK still in lockdown, JOY Bomb is taking to the streets this weekend, driving around the capital with a digital message board and sharing letters and gratifications.
The van is also hoping to pass as many hospitals as possible in a bid to thank the hard workers of the NHS and care homes for their selfless work. Proceeds from every installation support the Healey Center for ALS.
"I can mope at home and get drunk and eat a load of chocolate, but he would be so happy and proud to see this creation going around London and I hope it makes people as happy as possible," said Amy.
"We met six years ago this month - on a blind date. Sean was the most romantic person. He was American - so I don't know if that was part of it - but it was very hard to one-up him on the romance front.
"He had a terminal disease but he was the happiest, most joyful person. He never said 'why me' and he was never bitter about his diagnosis. That's something I try to remember now during lockdown, I try to remember what a good attitude he had all the time."
For more information on JOY Bomb London, you can visit the website here.
Topics: Life News, Valentine's Day, Health