Although she won’t remember, her first Christmas in 2019 was spent in hospital recovering from a serious operation to relieve pressure on her brain. But we remember her second Christmas so well because that was the year Brian House came to visit to provide their expert care, armed with a sack full of goodies for her, as well as presents for her older brother, Harry.

That meant the world to us.

Last year, once the pandemic was over, she met Father Christmas at Brian House. It was amazing and magical, just like it would be for all children.

Matilda had open heart surgery when she was just six weeks old, followed by another heart operation before her first birthday. She was nearly two before she first came home from hospital.

Brian House came to see us straight away.

They brought things for Matilda to play with, as best she can, but they involved Harry in everything. They made him feel as included as Matilda.

Now, she goes to the hospice once a month for a sleepover.

We know that she is being looked after by people know her and her care and who she trusts. That makes being away from her that bit easier – we’re not constantly worrying about her because we know she is safe.

We can put everything into Harry for that time Matilda is in Brian House, and then me and my husband get important time together; sometimes just a meal on our own and the chance to reconnect as husband and wife.

With Matilda at home, her care needs are constant.

She is fed through a tube. She is immobile and completely wheelchair bound. She’s non-verbal. Her heart can trip at any moment, with the most drastic outcome leaving her in a life-threatening situation. Simply leaving her with a babysitter is just not possible.

But despite everything, she’s such a happy girl with a huge smile.

We already knew about Brian House, but what has surprised us is how they’ve supported Harry, almost as much as they have Matilda.

Harry was only four when we started this journey. I think a lot of people forget about siblings; they just have to get on with things when you’re dealing with a child with multiple complex needs. When Harry is with other children who are going through the same thing in their family, they get the chance to just be kids again. They all have their own stuff going on, but they have a common ground. That’s been really helpful for Harry.

You forget that Brian House is a hospice when you’re there. It’s just like home – it feels loving and caring and warm. It’s just a lovely place to be. It’s Matilda’s happy place.

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