I think it’s only when you’ve been through such challenges yourself that you can truly understand how others are feeling – and it’s wonderful to have friends at Brian House that we can share our experiences with.

Hi there,

Our little boy Ellis was born a few years ago on Boxing Day at just 24 weeks old.

Just before Christmas, when I was pregnant, everything seemed fine. I was a chef and I remember thinking how nice it was going to be to have the holiday off for once – but instead, I went into labour on 22 December – four months early.

My partner Matt and I were both terrified. Ellis was born and then immediately taken away from us. He was so small that the hospital didn’t have any clothes to fit him. They had to use a padded Tesco freezer bag to keep him warm! We didn’t get to meet him for the first time until he was 6 hours old and were told he could die any minute. We couldn’t hold him until New Year’s Eve – but it was wonderful to have him in my arms for the first time during the countdown. My special little boy is in my arms every year at that time – it’s become a tradition for us.

But in those first few days, he was so fragile, and he wasn’t taking nutrients. An ambulance rushed him to Manchester Children’s Hospital where he had surgery to fix two perforations in his bowel. He weighed less than two pounds then – it’s absolutely amazing what surgeons are able to do.

Ellis finally came home to us on Mother’s Day – and that’s the day as his parents we also became his full-time carers. We met the Brian House nursing team soon after; we needed support, but at a place where we knew Ellis would be cared for properly.

Today, Ellis is a very clever, happy boy; but his health is still – and always will be – very delicate. He is blind in one eye and just a little circle of dim vision in the other. He’s able to sit up on his own now, but because of his vision he can’t stay up for long. Ellis is still fed by a tube – although he’s starting to be able to have things like yogurt (which he loves)!

The team at Brian House are amazing, they just whisk him away and he has so much fun, drawing pictures, playing games. They’re completely supportive of us too – and they don’t mind when we ask a stupid question! They give Matt and I the chance to have a little break and just be together.

We’ve also become close friends with another family with a young child who is also cared for by Brian House. I think it’s only when you’ve been through such challenges yourself that you can truly understand how others are feeling – and it’s wonderful to have friends we can share our experiences with.

Christmas for us is so important; it’s a chance for the whole family to be together and do the normal things – have a lovely meal, open presents, watch films. Ellis gets proper Christmas presents on Christmas Day, followed by proper birthday presents the next day – ‘joint’ presents are strictly banned!

We’re looking forward to Christmas and Ellis’ birthday celebration this year. And we’re all excited about the Christmas party, which is where all local families with children like Ellis can come together. It’s a brilliant day. I hope you can choose to support Brian House this Christmas – we know exactly how important their care is. Thanks for your help and we hope you have a wonderful Christmas with your family.

Emma & Matt x

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