Right now isolated is how we spend every day, especially during the winter, when we’re trying to keep Alfie away from bugs and viruses. To everyone else they’re just coughs and colds, but for Alfie they’re a really big thing – in six months, he was in and out of hospital four times with chest infections.  

But of course Coronavirus is different. It’s really dangerous for Alfie and so worrying for us. I’m thinking about it all the time and not sleeping. We’re all OK at the moment but we worry about Alfie. It doesn’t feel like there is a light at the end of the tunnel. This is not the next three weeks for us; this is the next 18 months.

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Alfie and his family

We were self isolating two weeks before the rest of the country because Alfie is so vulnerable - my husband, Joey, started to work from home and we took his older sister, Tia, out of school. It hasn’t been easy for Tia as she was self isolating while her friends were all still out and about and at school. I think she found it easier when everyone was told to stay at home and not go out. But home schooling with one child who needs 24/7 care isn’t easy!

Sam, our Julia’s House nurse, has been a lifeline coming out to visit us and care for Alfie. Just a few hours a week has meant I could spend some time with Tia either on her school work, baking or just pottering about in the garden together.  Also, having the time to go shopping for essentials before they sell out. 

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Alfie and his Julia's House carers

That time has been really important for us. But we’ve literally just had to take the decision to cancel our Julia’s House sits for now and the community nurse. Everyone has been great, washing their hands and using hand sanitiser but we just want to restrict people coming into the house- now it’s no-one in, no-one out. It’s just us but it means one less thing for us to worry about. 

Sam has said she’ll be around if we need her so I know I can call her at anytime. She’s offered to collect medicines and supplies for Alfie, really anything we need. That’s so good to know when you’re feeling very alone. I know I’ll be able to call if we change our minds about the sits too and feel we need a couple of hours help at home. Our community nurse has been great as well.   

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Most of Alfie’s medicines and supplies such as his nutrition are home delivered which sounds helpful but I am worried about supplies running low and not being able to get hold of what he needs. I’ve been trying to contact the hospital and GP but of course everyone is so busy. 

It doesn’t help with that feeling of isolation. And Alfie has just had major surgery cancelled for the third time. That’s a worry too, as you build yourself up and then it doesn’t happen. We understand and right now we would obviously prefer him not to be in hospital, but that’s now in the back of my mind that I’ve got to build myself up to it all over again.