Mum banned from seeing son, 10, with 'five years left to live' in local lockdown

A ‘heartbroken’ northern mum whose 10-year-old son may only have five years to live has begged the government to re-examine lockdown rules after being banned from seeing him for almost five months.

Kate Jones, 41, says a ‘piece of me is missing’ after the government tightened restrictions on Greater Manchester last week, leaving her once again unable to visit severely disabled son Josh, 10, who lives in a residential care home.

After being pulled away from her son for nearly half a year now, the mum-of-two fears she is ‘wasting time’ – with doctors estimating Josh will die by the time he is 15 and medical experts warning a coronavirus vaccine may never be found.

She is now appealing to the government to introduce laws that treat parents of sick children living in residential homes the same as care home staff during the pandemic – meaning they could visit wearing PPE, following thorough safety checks.

Speaking to, Kate said: ‘It’s been dreadful. Heart-breaking. Josh is end-of-life-stage, he probably won’t make adulthood. 

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‘We’re used to just popping into the home and giving him hugs. I never thought for a minute we wouldn’t be able to touch or hold him. 

‘We’ve tried to keep it together for my youngest son Seb who’s six, but he says “Where’s Josh? I miss Josh” It feels very empty at weekends. Not knowing when this is going to end is hard.’

Josh suffers from a rare neuro-developmental disorder called FOXG1 syndrome and has experienced a number of other medical complications that forced him to have a tracheotomy and a colostomy.

His parents placed him in a Greater Manchester residential home in 2012 after realising they could not offer him the 24/7 care he requires while also holding down jobs.

But the family, who normally visit during the week and bring him home on weekends, were left devastated when the UK went into lockdown and he was ‘trapped’ in the home.

They had no contact with Josh during lockdown aside from on Skype – but this method was unsuccessful as he cannot talk and cannot see properly.

Kate claims there is little to no government guidance on her situation, with ministers ‘not seeming to recognise’ it.

She was allowed to see her son on three occasions in July when residential home bosses relented after restrictions across the UK were loosened.

As Josh is incredibly vulnerable to infection, the family had to stand at a two-metre distance in the garden, with Kate forced to watch as workers took care of her son.

They were stopped from seeing him again when Matt Hancock announced people in Greater Manchester, east Lancashire and parts of West Yorkshire were banned from visiting other households indoors, just two hours before the new rules came into effect.

However, the family say the government has no idea of the physiological effects of the separation.

Kate said: ‘Josh will die and he’s being protected against something that could kill him, I know that. But I feel like we’re wasting time. 

‘It’s been five months since we were able to hold our son which is tough to explain. I’ve lost a lot of weight, my husband has lost a lot of weight. Psychologically, it’s been really hard. 

‘Josh is always in my mind, we feel empty, like a part of us is missing at the moment. There’s no end in sight.’

She added: ‘It’s hard to know what Josh feels because he’s so severely disabled, but he’s used to being with us every week and his dad scooping him up from his wheelchair and hugging him and putting him on his lap. 

‘He’s probably wondering where we have gone and whether we’ve deserted him which we haven’t at all – not by choice.’

The mother has now started a campaign to appeal for the ‘many’ parents in similar situations to be able to see their children once a week during the pandemic.

She said: ‘What angers me is that it doesn’t seem to make any logical sense. The government has said Josh doesn’t have to shield anymore, but we’re not allowed to go in a very strict, stringent way to the garden of his residential and stand with him – but then we can, in theory, go to a beer garden and run into his carer.

‘Staff are coming in, going out, going to their families, wearing PPE and being very cautious, so surely as his parents we could do the same? We would do everything to protect Josh.’

A spokesperson for the Department of Education told ‘We know that being unable to see family will have both emotional and practical consequences for children, their families and carers.

‘It is important that children and young people in care can continue seeing their families at this time wherever possible – our guidance is clear that face-to-face contact should continue to happen, taking account of social distancing guidelines, and children should be supported to manage this. 

‘Only where this is not possible should other ways to facilitate contact, such as video calls or ‘virtual’ visits be necessary. Providers should be as flexible as possible in finding ways for children to have visits.’

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