Pressing her face to the window of the hospital ward where her Covid-stricken husband drifted in and out of consciousness, Maryanne Pilling desperately tried to raise his fighting spirit.
‘Tommy, I’m here! Tommy, I love you! You’re going to be all right,’ she shouted, waving and blowing him kisses through the frosted glass.
‘Look, he’s seen me and he waved back,’ she exclaimed to her mother, Linda Martin, who had driven her to the hospital in Basildon, Essex, on Christmas Day.
Sadly, it was an illusion. By then, Tommy Pilling was so ill that he could barely open his eyes or raise his head from the pillow.
At 1.40 am on New Year’s Day, Mrs Martin was woken by the call she’d been expecting while clinging to the hope that it might never come.
The family of Maryanne Pilling have spoken about her heartache after husband Tommy died from Covid. The trailblazing Down’s Syndrome couple married in Shoebury, Essex, in 1995
True love: Maryanne and Tommy Pilling, who tragically lost his battle with Covid, on their wedding day in 1995 when they became the UK’s first couple with Down’s Syndrome to marry
It marked the end of a 25-year marriage that made history. A marriage that unenlightened naysayers believed should never have been permitted, and could not possibly flourish.
Yet a union that would come to prove that true love knows no boundaries, and which would do much to transform society’s attitude towards people born with disability.
For on July 15, 1995, when Tommy and Maryanne Pilling walked down the aisle of St Mary The Virgin Church, in North Shoebury, Essex, they were recognised as the first couple with Down’s syndrome to become man and wife. Not just in Britain, but worldwide.
Their uplifting story captivated global attention, providing hope and inspiration to thousands of families and blazing a trail for the less-abled.
Social media videos chronicling their life together have been viewed more than 50 million times; their Facebook page — titled simply ‘Maryanne and Tommy’ — has amassed 73,000 followers; they have featured in magazines and TV shows across the continents.
So, while Tommy’s death at 62 brings a poignant denouement to the couple’s story and has devastated both his and Maryanne’s family, they are determined not to be mournful.
In the 30 years since their courtship began, Tommy and Maryanne have spent one night apart
They have granted this exclusive interview in celebration of the ‘idyllic’ romance between a couple so devoted to one another that until Tommy contracted coronavirus they had spent just one night apart in the 30 years since their courtship began.
On the surface, Tommy and Maryanne weren’t an obvious match. An only child, orphaned when he was 12 years old, Tommy was raised in an Essex care home of which he had unhappy memories.
A lack of close support impaired his development and meant he paid little attention to his appearance.
Born in 1971, when Down’s syndrome children were routinely subjected to appalling ignorance and prejudice, Maryanne also suffered early setbacks.
Even on the maternity wing there were cruel whispers from other mothers. And her father — Linda’s first husband — rejected her, as did his family.
Then, when she was 12, her ten-year-old brother Philip drowned in a pool on a Spanish holiday, and that terrible trauma had a detrimental effect on her progress.
However, thanks to Linda’s dedication, she grew into a vivacious, gregarious and popular girl.
Her mother was determined to bring her up in the same way as her siblings (she also had another younger brother and sister) encouraging her to read and pronounce words correctly, styling her hair, and encouraging her fashion sense.
Couple were believed to be longest married couple with Down’s Syndrome – married 25 years
That said, Linda smiles, it wasn’t always easy.
‘She was very much a livewire. An absolute nightmare, if I’m honest. She had no fear of anything: fire, water, heights. When she was three I found her on the roof with Philip, who was 18 months old.’
Maryanne and Tommy met in 1990, when both were working in the kitchen at a home for people with learning disabilities.
He was 32, she was just 19. From the moment she came home — ‘all bubbly, and with a twinkle in her eye’ — and announced she’d ‘met someone called Tommy’, her mother knew she was smitten. ‘Whenever she spoke about him, she couldn’t stop beaming,’ says Linda.
Soon Tommy was invited for dinner at Maryanne’s home in Shoeburyness. Since he was quiet and old-fashioned, and her daughter was an extrovert ‘chatterbox’, Linda worried that their personalities were too different for a romance to work.
But she was reassured when she saw how Maryanne ‘brought Tommy out of himself’, and by the obvious joy they took in one-another’s company.
They shared many interests: a love of music, cooking, dining out, or just sitting together doing craftwork.
Another mutual passion was dancing. Tommy was a fanatical Elvis Presley fan, and — as he became more comfortable with Maryanne’s family — he’d put on one of his CDs, take her by the hand and whisk her around the room or serenade her with his favourite tracks, such as Love Me Tender.
He was an entertainer, too, and would have had her — and the rest of the family — in fits of giggles by putting on impromptu puppet shows using his socks, and doing magic tricks, comically botched in the style of Tommy Cooper.
Maryanne’s sister, Lindi Newman, now 33, but a little girl when Maryanne and Tommy began courting, recalls a house always filled with laughter.
‘It was like watching a fairy tale,’ she says of their blossoming relationship. ‘They were in their own little bubble and only had eyes for each other.’
After dating for 18 months, Tommy proposed to Maryanne, and she accepted with glee. In his gentlemanly manner, however, he sought Linda’s permission before using his savings to buy a silver ring decorated with a red rose.
‘I said, “Of course, you can darling, with my blessing”,’ Linda says. ‘I thought, why shouldn’t they be the same as anybody else? I had absolutely no reservations.’
Others were less broad-minded, however, and as word of their intended nuptials spread, the malicious sniping began.
A rumour started doing the rounds that Tommy had presented his fiancée with a plastic ring he’d won at a fairground — a ‘fact’ reported by a local newspaper.
Other people confronted Linda in the street and told her: ‘You don’t know what you’ve started here — they’re all going to start getting married now.’
The couple had been shielding for ten months. Here they are pictured on holiday together
One ‘random woman’ asked her: ‘What are you going to do about their sex life?’
Linda says: ‘I told her, ‘‘Well, I’m going to leave it to them, the same as with my other daughter. Is that all right with you?’’ ’
Despite this nasty undercurrent, most people wished the couple well. Among them was Father Tim Codling, then a young curate at St Mary The Virgin Church. When he was asked to officiate at their wedding, he said he would be ‘honoured’ to do so.
Filmed by Channel 5 News, the big day was a wonder to behold.
Maryanne wore a tiara and a white dress hand-sewn with diamante and sequined slippers on her size two feet. Tommy sported a made-to-measure blue suit with a yellow carnation button-hole.
As they exchanged vows, there was barely a dry eye among the 200 guests. But tears quickly turned to laughter as the couple pranced down the aisle to their signature tune — The Time Of My Life — from the film Dirty Dancing.
‘I was absolutely gobsmacked, I didn’t have any idea that they had rehearsed that dance,’ says Linda.
‘We were in church so long that the poor girl whose wedding came after theirs had to go away and drive around the block five times!’
Tommy popped the question with a toy ring from a vending machine after 18-months of dating
The couple lived with Linda and her family for seven years before moving into their own flat next door. Though they could manage basic household tasks, Maryanne’s sister Lindi, then 17, became their carer.
It was a role she embraced with admirable zest and devotion, aided, after she was married, by her husband Andrew, a school department head, and often accompanied by their children Sophie, 11 and Jude, five.
According to Lindi, Tommy and Maryanne’s life together before the pandemic was a frenetic whirl of fun.
One day, they would be at a theme park, cinema, zoo or farm; the next shopping, dining out, ten-pin bowling, playing crazy golf or strolling — always holding hands — along Southend Pier.
‘It was an idyllic life,’ Lindi told me wistfully. ‘I joked that I was just their PA. Tommy would see the funny side of everything, and they made up their own jokes which they found hysterical, but no one else could understand.
‘And they were so affectionate. If we went to a restaurant, they had to sit next to each other. Maryanne always had her arm round him. When they met someone, she would introduce him proudly by saying: ‘‘This is my husband, Tommy’’.’
Lindi says Maryanne was naturally maternal, and would fuss over Tommy. These instincts became more evident six years ago, when he was diagnosed with Alzheimer’s disease.
Maryanne would tie his shoe-laces, fasten his buttons, and wipe his face with a napkin after meals.
The last photo the love-struck couple had together before Tommy passed away last month
‘I don’t want to generalise, and I have to be careful how I word it, but I think people with Down’s syndrome have pure intentions. Pure hearts.
They don’t know how to be mean,’ says Lindi. ‘If they love you, they love you unconditionally. So their love for one another was absolutely pure and beautiful.’
She sighs: ‘They taught me and my children so much as we grew up: kindness, patience, respect. If Tommy saw a homeless person, he’d start crying and offer them all his money, and ask why they couldn’t have his house.’
Regrettably, some took advantage of his good nature. In 2015, while browsing in a charity shop, two men feigned to befriend him, but as one shook his hand the other stole his wallet: a despicable ploy caught on CCTV.
When Lindi exposed the crime on Facebook, incensed members of the local motorbike club tracked down the thieves and frog-marched them to the police station.
The community also warmed to Tommy and Maryanne, so Lindi set up their own social media site; an amalgam of photos, videos and blogs, and educational material on Down’s. Their website has provided support for families around the world.
One mother wrote to say she had considered aborting her baby girl after doctors warned — inaccurately, as it transpired — that she might be born with Down’s. Reading about the Pillings had made her change her mind.
For their part, Tommy and Maryanne found it hard to grasp how influential they’d become.
Tommy Pilling, 62, from Southend-on-Sea, Essex, lost his battle to coronavirus on January 1, leaving behind his doting wife Maryanne, 49 (pictured together when they were young)
Once, to help them understand how many followers they had, Lindi’s husband photographed the crowd at a Spurs football match and showed it to them as an illustration of their popularity.
Meanwhile, their adventures continued apace, including a surprise trip to Elvis Presley’s home, Graceland.
On the U.S. trip, they danced in the blues bars of Memphis and visited the location where Dirty Dancing was filmed. On another occasion, Lindi and her family took them to Disneyland Paris.
Last year, 2020, was intended to be the ‘big one’ for the couple and their families: they would celebrate their silver wedding, Lindi and Andrew their tenth, and Linda her 70th birthday. A huge party was planned and a holiday at Butlin’s, but Covid scuppered it all.
On top of this, came the crushing effects of the lockdown. Tommy and Maryanne were largely confined to their flat, shielding for months on end. Lindi tended their needs dressed in full PPE. When the couple ventured out in summer, it was for a socially-distanced meal in the garden or a walk.
Deprived of the stimulation on which he thrived, Tommy sank into a decline. To Maryanne’s distress, he would wander around at 3am, or mistake the TV remote- controller for the phone.
Her worried mother moved them into her house as part of her support bubble, but thought they should sleep in their flat occasionally, so it would stay familiar. It was on one of these nights, in early December, that Tommy tripped in the bathroom and hit his head.
At Southend General Hospital he was examined and discharged but, four days later, on December 10, he complained of chest pains and was admitted to the wards.
Tommy was diagnosed with Covid in December. The family praise NHS staff who nursed him
It later came as some consolation that the family had encouraged Tommy and Maryanne to open the Christmas presents they’d bought for one another (Elvis memorabilia from her, perfume and a necklace from him) a few hours before the ambulance arrived.
By then, Tommy had undergone two Covid tests at the hospital, and both were negative. After a week, he had a third, which was positive.
For a 62-year-old man with Down’s Syndrome, Alzheimer’s and a chest infection, the outlook was grave.
He was transferred to Thurrock Community Hospital, where Maryanne saw him for the last time through that frosted window, then to Basildon University Hospital where, on New Year’s Day, he died.
Tommy will be buried in the family plot, beside Linda’s son Philip and, when the pandemic resides, his life will be celebrated with a memorial service.
At 7pm tomorrow, Tommy’s family have asked that people photograph a lighted candle in his memory and post it on the couple’s Facebook page.
Linda has broken the news of Tommy’s passing to Maryanne gently. It was only last Monday that she told her that he had ‘gone to heaven’. Her 49-year-old daughter became tearful and clingy, but seemed to understand. Yet two days later, she asked Linda: ‘Mum, when is my husband coming home?’
Etched in my memory are the plaintive few words Maryanne spoke to me this week, when I asked, over video link, how she was bearing up to her loss.
‘I miss Tommy. I’ve been crying. I miss my boy. I miss his cuddles,’ she told me. Yet, as Linda says: ‘Tommy and Maryanne had 30 years of love and laughter so, in the end, this is an uplifting story.
‘They’ve changed the world for the better for thousands of people and taken the stigma of Down’s syndrome away. I’m just so glad that I went with my instincts when Tommy asked for my daughter’s hand, all those years ago.’