Covid shielding at Christmas: 'Our son, 9, would not survive virus'

Macsen was very unwell in January after several chest infections not thought to be coronavirus-related

The relaxation of Covid-19 restrictions in Wales on Christmas Day will allow many people to form a two-household bubble with loved ones. But thousands of people who have been shielding during the pandemic won't have that luxury.

About 130,000 people in Wales deemed extremely vulnerable due to underlying health conditions have once again been told to stay home by the Welsh Government.

Although government-advised shielding previously ended in August, many haven't been able to truly stop shielding since the start of the pandemic.

BBC Wales has spoken to a number of people who are facing the prospect of not seeing their nearest and dearest this Christmas.

'Covid would kill our nine-year-old son'

Matthew and Lisa have two sons, nine-year-old Macsen and 12-year-old Ioan

By any metric, Matthew and Lisa Williams and their sons Macsen and Ioan, from Swansea, have had a very difficult time during the pandemic.

Nine-year-old Macsen has multiple neurological disorders caused by a rare genetic mutation, including quadriplegic cerebral palsy, uncontrolled epilepsy, cortical visual impairment and respiratory conditions.

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It means he cannot sit, stand, roll or walk unaided, can have up to 40 seizures per day, has vision "like looking through Swiss cheese" and is fed through a tube.

The family have been effectively shielding since January after Macsen became so unwell with chest infections that anaesthetists had to hold his head manually for hours at a time to help him breathe.

Macsen, pictured left, and his brother Ioan both "worship" their grandparents - but will be unable to see them

"We kind of had a preview of what he would be like if he had Covid - if he had that now, I'm not sure he would be able to fight it," says Matthew.

Although Christmas Day is usually spent together without guests, Matthew said the family would normally see grandparents and friends in the days before and after - but will be unable to this year.

"It's really sad for the kids - both worship their grandparents as well, so it's really sad knowing they are not going to physically see them," he explained.

"The biggest thing I'm thinking of is that Macsen loves Christmas in school. He's had a whole year without school and it's his favourite place in the world."

'I was at such a low point'

Matthew and Lisa both have health challenges of their own

The demands of raising a child with needs as complex as Macsen's during a pandemic are unimaginable to most people, but both Matthew and Lisa also have health challenges of their own.

Matthew has Charcot-Marie-Tooth disease, a genetic condition which means he is losing strength in his limbs and is often physically exhausted.

Lisa suffers with both chronic migraines - up to 25 a month without treatment - and endometriosis, which can cause debilitating pain and extremely heavy periods.

Earlier in the pandemic, Ioan, who is 12 and in secondary school, had a cold which meant he had to isolate in his own bedroom for two weeks to avoid passing it on to Macsen.

Lisa was looking after Ioan while Matthew looked after Macsen in another part of the house.

"When you think you're at your lowest point, something else happens," says Matthew

Towards the end of the two weeks, Lisa caught a cold which meant Matthew had to continue looking after Macsen alone for another two weeks.

"I was at such a low point at the end of the four weeks that I broke down," said Matthew.

Tŷ Hafan, a charity which cares for children with life-limiting conditions, stepped in and took Macsen in to give the family respite for a week or so.

"That's been our lives for nine years - when you think you are at the lowest point, something else happens," Matthew added.

'Ostracised by Covid'

Rhiannon Jones, who has cerebral palsy and has been shielding, says her mental health has suffered from not seeing family

Rhiannon Jones, 21, has cerebral palsy and has been living in a Leonard Cheshire care home for disabled people near Newport since she left her family home in October.

Because her condition can affect her breathing, she has been forced to shield as she waits to be housed with her 22-year-old sister in Bridgend.

"I'm a very sociable person, so not seeing people has definitely impacted my mental health," she said.

"I was diagnosed with depression and PTSD so it has not been a very good time for me, but the care staff here have been so supportive."

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Rhiannon said she has been shielding since the first lockdown was announced in March, and accepts "there's not much likelihood" of seeing family over Christmas.

"It has felt like an eternity because I haven't been able to see my family," she said.

"Covid has made everything so impersonal. I thrive off my family support. I feel like I have been ostracised by Covid."

'I'm used to my family being there'

Dot, centre, pictured with her children Gary, Michael, Sean, Stephen, Martin, Collete and grandson Liam

Dot Gallagher, 72, is full-time carer for her sons Gary, 47, who has learning disabilities and muscular dystrophy, and Michael, 32, who has Down's syndrome.

Along with another son Martin, 53, the family have been shielding at their home in Holyhead since March.

"It's difficult. I'm used to most of my family being there," said Dot, who is chairwoman of learning disability charity Mencap on Anglesey.

In total, Dot has five sons and a daughter who usually spend Christmas together.

Dot's son Michael, 32, pictured with his girlfriend Alison

"We would all normally be together, and everyone would bring something to the table on Christmas Day," she said.

But the sacrifices Dot and her family have already made have only stiffened her resolve to avoid letting their guard down.

"I'm not going to waste what I consider to be a year of our lives keeping them safe, just to enjoy two days at Christmas," she explained.

'The loneliness and isolation goes on'

Deborah Ho, director of care at Tŷ Hafan, said: "This year, families are balancing the wish to see their families with the need to protect their child from the risks that Covid-19 presents.

"Many families have made the difficult decision to see families from a distance as opposed to face to face, meaning the loneliness and isolation they have felt throughout 2020 goes on."

The Leonard Cheshire charity urged people who are shielding "to adhere to guidelines and use their own personal discretion to ensure they remain safe from the virus".