With lockdown providing the nation with a glimpse of what life is normally like, caring for a child with life-limiting conditions, we caught up with John, Grandfather and carer to 7 year old Hope at the hospice. Children at Richard House are in the high-risk category of severe complications from coronavirus. Catching the common cold could create complications for our seriously ill children let alone COVID-19, therefore shielding is often the norm for families like ours at Richard House. Hope is a cheerful child who suffers from a rare life-limiting condition called neutropenia, here’s what Grandad John had to say about their experiences throughout the pandemic so far:

"Initially Hope couldn’t understand why she couldn’t go and play with her friend next door or, why we weren’t able to go to the coast this year as we were shielding her. Home schooling worked if and when the technology worked that day. Thankfully my youngest daughter was able to do a lot of the work with Hope and eventually she completed most of the homework.

Day to day to living with three adults and a child in one space, with my wife working from home was a challenge. We also had a bit of scare, I showing some symptoms of COVID 19 and I was worried that there wouldn’t really be enough space to self-isolate, it was the worst week we ever had but thankfully the tests came back negative. At the time, it was difficult for Hope to understand why she couldn’t give me a cuddle. As soon as we got the results, Hope flew across the floor and gave me a hug!

If I caught Coronavirus, I would end up in hospital alone and I would have to deal with that. However, if Hope went into hospital with Coronavirus, my worry would be that we wouldn’t be able to stay with her in hospital. Hope’s metabolic condition would need to be considered too, our local hospital would have needed to be able to deal with Hopes condition.

During lockdown, Hope was showing signs of being unwell with her condition. My immediate thoughts were that we may have to ring Evelina, London Children’s Hospital. In turn, they would contact local hospitals to find out if they had enough bed space, and we would get triaged there because of the pandemic, it would have been a nightmare.

We have done the best we can to stay safe. We were taking it in turns to leave the house to get food whilst the other family members were staying home to keep Hope entertained, it was a nightmare trying to get priority slots at Supermarkets initially but we did eventually. I left the house with the mindset of getting the groceries I needed and coming back with whatever I could get. We were constantly cleaning all the time, in an attempt to keep Hope safe. Since shielding, we have not been out that often. Hope was able to attend a local birthday party in the park, in which all the children and their parents were social distancing from each other. Hope was able to finally go on the slide’s and swing’s in the park but she misses the interactions with people.

People lean on Richard House for much support, the respite, social events, the list is endless, and it has all been missed. It would be an absolute disaster if Richard House folded, it would have a much wider impact on the local area, vulnerable children and their families.

Richard House does what it does best and I encourage everyone to support the hospice without a doubt because they are vital to the community and a community of children with life-limiting conditions. In some respects, Richard House is more vital than the local hospital in receiving quality palliative care.

If people want to support a good cause, what better cause than Richard House. They’ve always made us feel welcome as a family, not just Hope. We attend family events at Richard House like the summer fair and before you know it, time has flown by. You leave knowing you’ve had such a lovely day. At Richard House I am able to provide the same care for Hope, that I do at home but under a more relaxed atmosphere. Everyone talks to us at Richard House, you don’t always get that in Hospitals, that’s why I think Richard House is brilliant.”

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