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Harry’s story

Samantha Warwicker’s nine-year-old son, Harry, has cerebral palsy with additional, complex health needs. When he became unwell with non-Covid-related complications just before lockdown, he was sent to the Evelina children’s hospital in London.

With Sam accompanying him, the best place for Harry’s 13-year-old sister Rhianne to stay was with Sam’s sister and her family. “Rianne’s dad – my ex – couldn’t have her because he works and has health issues of his own,” explains Sam, “So that’s when my sister stepped in. She and her husband are always there to give us support when we need it, and Harry and Rhianne get on really well with their three cousins. Under normal circumstance it’s the ideal solution.”

Once Harry was home from Evelina, though, lockdown was in full swing, meaning it was a couple of weeks before Rhianne could come home. “My brother in law works in a supermarket and the fear was, if he picked something up, and passed it on to Rhianne, she might pass it on to Harry. All we could do was sit it out for two weeks apart until we were as sure as we could be that everyone was ok. It was tough to be apart but, ultimately, we knew it was the sensible thing to do for the sake of all our health – but especially Harry’s.”

During this very anxious time, the ellenor team, their local children’s hospice service, with whom the family has a very strong relationship, were always on hand to offer support and guidance. “Ellenor has been part of our lives since Harry was tiny,” says Samantha. “We’ve had a variety of nurses over the years, and they’ve all been great. Rebecca has worked with us for the past six months and we’ve got a real sense of trust – not just between her and Harry but between her and me, too. Sometimes you can really doubt yourself as parent – yes, you trust your gut instinct when it comes to your kids, but when you’re dealing with children with complex health issues you do need reassurance that you’re doing the right thing. Rebecca is always on hand to give me that reassurance.”

As well as vital emotional support, the practical support ellenor provides is invaluable too. From ensuring that there was a plan in place to help the family to cope with lockdown, to having all necessary medicines and prescriptions for Harry ready, Rebecca was there.

“If I needed anything, I knew I only had to ask, and there were things I didn’t ask for but got anyway – like a much-needed food parcel from ellenor when we weren’t able to shop.”

Harry's mum, Sam

Now with the family reunited, how are they coping with lockdown? “Mainly it’s a case – as with any other family with kids – of just keeping the children busy and relatively happy. Rhianne has her school work, but for Harry it’s things like playing with sensory toys, lots of light-touch massage to keep him stimulated – and making the most of our garden hot tub when the weather’s warm.”

In these circumstances especially, it’s ellenor’s continuity of care and involvement with the family that Sam says she particularly appreciates.  “It’s something we never take for granted and that we’re so grateful for,” says Sam. “We’ve all benefitted from ellenor’s services over the years and in such a wide variety of ways. We’ve got great memories from the trip we all took as a family to Disneyland Paris, where the fabulous ellenor nurses who accompanied us ensured we didn’t have anything to do except enjoy ourselves.”

Ellenor has even been there to support the family when Sam’s father died, as an adult hospice service too, Sam said “It seemed right, somehow, that an organisation that has helped us care for Harry for so long, looked after my Dad in the last few weeks of his life, when he was in the ellenor hospice.”

Afterwards, when the family needed bereavement support, Sam was able to access music therapy for Rhianne, to help her process her grandfather’s death, while Sam’s sister benefitted from ellenor’s counselling services.

“Our family knows first-hand just how far-reaching ellenor’s support is, “Sam comments. “Whatever we’ve been through, the charity’s been there for us – just as we know it’ll be there for us whatever the future throws our way.”

“We never thought we’d have to deal with a pandemic situation on top of everything else that’s come our way – Covid-19 could have proved the last straw in our ability to cope. With ellenor’s help, though, we’re dealing with the situation, each day as it comes, and we never feel we’re alone.”

Harry's mum, Sam
Family stories