Originally published 2019-10-18.
Tommy and Maryanne Pilling on their wedding day in 1995, and decades later. Photos shared by the family on the couple’s Facebook page.
Tommy and Maryanne Pilling from Essex were one of the first married couples with Down syndrome in Britain. They met at a day centre, married in a church in 1995 and marked their 24th wedding anniversary in 2019, a milestone shared with thousands of followers on a Facebook page run by Maryanne’s sister. Tommy died at 62 on New Year’s Day 2021, weeks after a positive COVID-19 test, ending a marriage of 25 years.
Their story is often told as a tale of critics proven wrong. It is better told as what it was: a long, ordinary, affectionate marriage, with the help of a family who backed them.
How Tommy and Maryanne met
The two met at a day centre for adults with learning disabilities. According to The Independent, Tommy proposed after roughly eighteen months of courting. They married in a church in Essex in 1995, with Maryanne in a full white gown and Tommy in a dark suit.
Not everyone was happy for them. Maryanne’s family has said that people warned her mother the marriage was a mistake and would not last. Those warnings reflected attitudes that were common at the time, when many adults with Down syndrome still lived in institutions or with their parents and were rarely expected to form households of their own.
Reports often call the Pillings “the first” couple with Down syndrome to marry in the UK. That is hard to verify, since nobody keeps such a register, so “one of the first known” is the safer description.
Twenty-four years of married life
Maryanne’s sister, Lindi Newman, runs the couple’s Facebook page, Maryanne and Tom. It became a scrapbook of their life together: wedding photos, holidays, birthdays, cups of hot chocolate topped with cream and many pictures of the two of them simply sitting close together.
By the time of their 24th anniversary in 2019, the page had become a source of encouragement for families around the world. Lindi said that parents of babies with Down syndrome wrote to say the couple gave them hope about the kind of adult life their children might lead.
The comments under each post tell the same story. Strangers wished them a happy anniversary, said how content they looked and thanked the family for sharing. For a couple once told they would not make it, those messages were a quiet kind of answer.
What helped their marriage work
Interviews with the family over the years point to a few simple things. The couple had their own routines and their own home life, while family members helped with practical matters such as appointments, money and travel. The photos show a couple who simply enjoyed each other’s company, at home, on outings and at family celebrations.
That balance of independence and support is exactly what disability organisations recommend. Many adults with Down syndrome live in their own homes or in supported living, hold jobs, volunteer and have long relationships. The amount of help each person needs varies a great deal, and needing some help does not cancel the right to choose a partner.
In England and Wales, the law starts from the assumption that adults can make their own decisions, including about relationships and marriage. The key question is whether a person understands what marriage involves, not whether they have a particular diagnosis.
Down syndrome: a few facts behind the story
Down syndrome is caused by an extra full or partial copy of chromosome 21. It affects learning and development in different ways for different people, and it is linked to a higher risk of certain health conditions, including heart problems and thyroid conditions.
Life expectancy has risen dramatically. In the mid-20th century, many children with Down syndrome did not survive into adulthood; today, many people with the condition live into their sixties, thanks to better medical care, heart surgery in childhood and an end to institutional living. Tommy, born in 1958, belonged to the first generation that could expect a long adult life.
Adults with Down syndrome also face a much higher risk of developing Alzheimer’s disease earlier than the general population, partly because chromosome 21 carries a gene involved in producing amyloid, a protein linked to the disease. Families who notice changes in memory or behaviour should talk to a doctor.
Tommy Pilling, 1958–2021
In his last years Tommy was living with dementia. During the pandemic the couple shielded for about ten months, but in December 2020 Tommy tested positive for COVID-19. He died in hospital on New Year’s Day 2021, aged 62. People with Down syndrome were among the groups at highest risk from the virus, and the UK later gave adults with the condition priority for vaccination.
Lindi said her sister was heartbroken, adding: She doesn’t remember a life before Tommy.
After 25 years together, that may be the truest summary of their marriage.
Why their story still matters
The Pillings did not set out to be role models. They fell in love, married and built a life, and their family chose to share it. What readers took from it was simple: people with Down syndrome have the same wish for companionship as anyone else, and with the right support, that wish can last a lifetime.
For parents facing a new diagnosis, organisations such as the Down’s Syndrome Association in the UK offer information and contact with other families. The Pillings’ photographs, from the white wedding dress to the late-life cuddles, remain one of the warmest introductions to what adult life with Down syndrome can look like.
Sources: The Independent: Down syndrome couple celebrate 22 years of marriage; 1News (January 2021): Husband from one of UK’s first couples with Down syndrome dies of Covid-19; TODAY: Husband of famed couple with Down syndrome in 25-year marriage dies of COVID-19; NHS: Down’s syndrome; Down’s Syndrome Association; photos and posts from the Maryanne and Tom Facebook page.
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