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“WE TRY TO MAKE CHRISTMAS MAGICAL AND
NOT ABOUT HER BEING POORLY"
When Wallasey mum, Katie Lowe’s daughter, Ava, was diagnosed
with a degenerative disorder, Claire House Children’s Hospice
inspired her 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,” says Katie.
“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.
“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.
“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.
“Claire House and its team are fantastic. The support doesn’t change
even at Christmas time. They are still always there.
“The first Christmas Eve, we had to call the Claire House team
because Ava 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.
“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.
“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 try to make Christmas magical and not about her being poorly. “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.”
“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. Do something special important this Christmas. Find out how
you can help families like Ava’s by visiting clairehouse.org.uk/
xmas
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