‘A lot of families are terrified’ – dad of 10-year-old with serious condition opens up about hopes and fears amid Covid-19 outbreak

31st March 2020

A family whose 10-year-old son needs round the clock care have spoken out about their hopes and fears as they adjust to life in extended self-isolation.

Chester Mcintosh, who has been supported by Bluebell Wood Children’s Hospice since 2017, spent the first year of his life in hospital.

During the traumatic year, the family lived with the constant fear of losing their beloved son, a fear that was almost realised on more than one heart-breaking occasion.

Brave Chester battled on, defying doctors’ expectations every step of the way, and is now in his tenth year alongside his twin sister Rhianna.

He was eventually diagnosed with a Chromosome Deletion Disorder, which means his immune system only works to around 40 per cent of what would be expected. He also has chronic lung disease, suffers regular chest infections and has other serious health issues.

Chester, Rhianna, mum Lisa and dad Ian have been visiting their “Bluebell Wood family” since 2017 for a much-needed helping hand.

Ian, a former carer who left his job to take care of Chester full-time, understands what the families of the 1.5 million most vulnerable people in society are going through.

“A lot of families are really terrified, which is completely understandable,” said Ian, 53, from Chesterfield.

Chester 8“As someone with a vulnerable child you are always very cautious – but this is a different ball game entirely.”

The family first became aware of the COVID-19 pandemic when the outbreak in China hit the news.

“I remember saying to my wife Lisa that we need to be prepared for this,” said Ian.

“When you’re in a position like ours with a vulnerable child you’re acutely aware of just how quickly these infections can spread.

“Even in normal times we wouldn’t go to a busy supermarket in winter together or go out for a pub meal in flu season because the risk of infection to Chester is just too great.”

Chester’s family are making sure they have enough of the basics to see them through, as well as vital medical supplies, but warn against stockpiling.
“Stockpiling is something that you really shouldn’t do, regardless of your circumstances,” said Ian

“It’s just not fair on everyone else. And it’s unfortunate that people have been flouting the social distancing and isolation measures imposed so far – it’s a sorry state of affairs.

“That’s why we welcome the latest measures taken – it’s something that has to be done to protect one another.”

The family, who have always been very hygiene conscious, are now taking extra steps to keep Chester safe.

As well as smaller things such as using bacterial wipes to take the bins out, they have set-up a temporary letter box on their front wall so packages don’t come into the house unchecked.

“We’ve also put up a huge poster in our window informing people we have a child who is extremely vulnerable,” said Ian.

“You can find plenty of these online and it could make all the difference. A simple act of kindness, such as a well-meaning neighbour turning up on our doorstep, could very well lead to one of us catching Covid-19.”

The family are now doing all they can to stay active and healthy while they’re confined to their home.

“We’re very conscious of the health implications for all of us, not just Chester, because if Lisa and I were to fall ill it would make things incredibly difficult.
“We’re trying to get exercise as much as possible, get out into the garden and stay in a routine as much as we can.

“This could be dangerous for some time for the most vulnerable, so we need to prepare ourselves for that while being mindful of the effect it can have on people’s mental health.”

Ian’s top tips for families with vulnerable loved ones include sharing trusted information that may be helpful, keeping-up-to-date with the latest guidance and looking after yourself the best you can.

“I’d urge everyone not to be scared to share information with each other that might be helpful– it really could save someone’s life.”

Susan Wood, Head of Care at Bluebell Wood, said: “Here at Bluebell Wood we care for some of the most vulnerable children and young people in our society and it’s absolutely vital that people follow the guidelines on social distancing and self-isolation to help keep children like Chester safe.

“We’re doing all we can to be there for the families in our care and support the NHS, and we all have an important role to play in this.

“Over the coming weeks and months, our support networks are going to be more important than ever so we’re very proud to have such a wonderful Bluebell Wood community that goes above and beyond to help the most vulnerable every single day.”

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