The family of the UK’s ‘first-ever’ married couple with Down’s syndrome have launched a Christmas card appeal for the pair who have been forced to stay inside since the start of the pandemic.
Maryanne and Tommy Pillings celebrated their 25th wedding anniversary this year, but have had to shield since February and have been unable to see their friends or carry on with their normal life.
Tommy, 62, was diagnosed with Alzheimer’s six-and-a-half years ago and his condition has deteriorated since the start of the pandemic.
Maryanne’s sister, Lindi Newman, who has helped care for the pair for 16 years, said: “They don’t understand really what’s going on.
“We just tell them basically there’s a bug outside and if you get it it can be very bad but then she doesn’t understand why some of the shops are open and she can’t go to those shops like we used to and things like that – it’s very confusing.
Newman said the pair “takes each day as it comes”.
The couple have barely left their house since it all began except a few trips out during the summer.
Newman added: “It’s difficult before they did lead quite a busy life and everything has been taken away from them, they can’t go out.”
Prior to lockdown, Newman said Tommy had been mostly able to function like normal despite his Alzheimer’s. But without his everyday life to keep his brain busy he has got much worse.
She said: “Tommy’s abilities that have dramatically declined, he’s not getting up and getting ready for the day because he’s not going out and actively doing things and keeping his brain ticking over and he’s lost so much mobility now.”
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Tommy often struggles to get dressed and put his shoes on, with most basic tasks like brushing teeth and taking tablets often confusing for him, she added.
He also struggles to recognise who his wife is and often gets upset and confused with the world around him.
Newman said: “It’s hard for the whole family. Tommy came into my life when I was two-and-a-half and I’m now 33, so I literally don’t have a memory without him.
“I’ve cared for them both for 16 years so watching their decline in front of my eyes is awful.”
Newman said Maryanne, 49, has been “absolutely incredible” caring for her husband.
“She has more patience than anyone that I’ve ever seen in my life she cares for him so much, nothing is too much trouble.
“She doesn’t understand what Alzheimer’s is but we just telling his brain isn’t working as fast or as effectively as it used to.”
With Christmas around the corner, Newman has started a campaign to get as many people to send the pair cards to keep their spirits up over the festive period.
You can find more out about the Christmas card campaign and Tommy and Maryanne on their Facebook page here.
Newman said she did something similar for Tommy when he turned 62 in March but couldn’t celebrate like normal.
In March she shared an appeal on the pair’s Facebook page and he ended up with 75 cards on his birthday.
Newman said: “Even getting through the 75 then Tommy kept sitting there saying ‘I can’t believe this look at all my friends they all love me’, it was a heartwarming moment it was absolutely wonderful to watch because Maryanne also received cards as well just so she didn’t feel left out.”
This time around with the Christmas appeal, even more people have shown interest in sending their love to the married couple.
She said she expected around 1,000 cards based on how many comments and messages she had received, adding “the response has been absolutely incredible.”
Newman said she had also received offers of cakes from bakers and a farmer offering free outdoor cinema tickets but added “it was never about that it was always about the cards”.
Newman is hoping to go to the couple’s house on Christmas Day and help them open all of their cards together but recognises they probably won’t be able to spend the rest of the day together, even if rules are relaxed.
She said: “This virus is awful it’s not just going to not affect people on Christmas day, so how can I have them over at my house with my children who are all at school and my husband who’s at work.”
She said they planned to set up a video call around the dinner table so they could still talk while they eat.
Newman has been sharing the story of Maryanne and Tommy for years “not just because it’s a beautiful love story, it gives people that have a child or a loved one with Down’s Syndrome or a learning disability it makes them realise what is possible”.
She said they had come up with a motto for their story: “Anything is possible with love.”
Newman said she believed the pair were the first couple with Down’s syndrome to get married in the UK.
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