“We try to make Christmas magical and not about her being poorly.”
When Wallasey mum, Katie’s daughter, Ava, was diagnosed with a degenerative disorder, Claire House Children’s Hospice were there to help the family come to terms with it. Since then, Katie has been inspired to make every Christmas as magical as possible.
My daughter, Ava, was diagnosed with Metachromatic Leukodystrophy, a degenerative disorder which meant she has lost her ability to talk, sit up and is losing her sight.
The first year she was diagnosed, we were celebrating Christmas only a couple of months later. It was sad and bittersweet but she was smiling and happy and it was Ava who put the first Disney teddy on the tree.
The family were all trying not to cry because we knew it wouldn’t always be like that. But that has now made us want to make every year special because she was so happy.
When we found out about her illness, I thought I would never be able to do anything with her. But Claire House were the ones reassuring us straight away that we can still do things with her, that we can still go out.
Because of this, I wanted to make the most of Ava’s time before she started to regress. We took her to Disneyworld which was magical, because Ava was aware of everything and she absolutely loved it.
Now, when it comes to Christmas I make everything Disney-focused. Our tree only has Disney decorations, because I want to keep those memories going, even if she is no longer aware of it.
We try to make Christmas magical for Ava and not about her being poorly.
In the first year after she was diagnosed, she lost everything. She slowly started to lose her speech, before she stopped being able to talk. She cannot sit up properly and is now classed as severely sighted.
Claire House and its team are fantastic. The support doesn’t change even with Christmas. They are still always there.
The first Christmas Eve, we had to call the Claire House team because she had pulled out her feeding tube and we needed help to put it back in. The nurse on call did not even hesitate, she was just like “I am coming now.”
I don’t know what I would do without Claire House as they have literally helped with everything. There are moments when I feel I’m at a bad point and nothing will change that, but Claire House are there and help me through it.
They have inspired me to make memories when I could have feared doing anything with her.
When it comes to Christmas, we have to make the most of it. But it’s hard. It takes months preparing for that morning. But when it comes, she obviously cannot open her presents and she doesn’t really know what it is anymore.
Sometimes she will laugh but it can be a difficult day and I have to stop myself from crying.
We have to think differently to other families, but fortunately it is such a sensory time of the year.
So that Ava can enjoy it, I help her open her presents and she likes touching and hearing the wrapping paper. We have to make it a very sensory experience for her.
For us, Christmas is about forgetting about real life. We want to make it like a different world, where it is happier and magical for Ava. The support of Claire House helps us do this.