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Parents of girl with childhood dementia say Christmas is "probably going to be the last one" with her
National World - Broadcast Video
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07/12/2023
The devastated parents of a seven-year-old with a rare disease say this Christmas is "probably going to be the last one" with her.
Hayley and Dave Clarke's daughter Addy has a rare type of Batten Disease (CLN2), also known as childhood dementia.
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00:00
Life before Addy's diagnosis was normal, as you would expect any sort of family life to
00:17
be. It's really hard looking back at those memories because it's all the things that
00:23
a normal one year old, two year old, three year old, four year old would do and now it's
00:32
not like that. I remember the initial shock. You were sat there and you'd spoken to the
00:40
top leading paediatric consultant within the hospital and he said it's Batten's disease
00:48
and he went into the genetics and I was like I don't care, I just want to know what it
00:53
means and I remember going back home and I couldn't look at her because within those
01:04
words everything changed. Its nickname is childhood dementia. In effect her brain is
01:15
shrinking from the body's ineffectiveness of being able to get rid of cell waste. So
01:21
the disease steals every skill that the child will have ever learned. Addy's condition is
01:30
sadly degenerative so how she is now, things will progress and she will slowly lose more
01:37
mobility and lost sight and things will become much more difficult for Addy and the family
01:42
and that can often happen in quite a short space of time. We just needed help so much
01:50
and our social worker helped us to understand that that's what Julia's house would be and
01:54
oh my goodness that is what Julia's house has been. They've been there since almost
02:01
the beginning and so they have walked through a journey with us where we have been losing
02:10
things with Addy. They've been there as Addy has stopped walking by herself, as she's stopped
02:15
eating and just the way that Julia's house comes to our home is so incredible. To have
02:24
those moments that you know in the week I can go and put the clothes away or I can go
02:31
and have a nap and they've been such a support to us along this journey. We don't know what's
02:38
around the corner, we don't know what next month will hold, you know, next year will
02:43
hold and so we are just trying to live and make the most of really what's in our laps
02:49
at this point. I think we're acutely aware that this Christmas is probably going to be
02:55
the last one that she can see so I think because of that you want to just grab hold of everything
03:04
that you can. If I could grant a wish for the family it would be that they could have
03:14
a family Christmas all together and that they don't have to worry about anything so they
03:18
can just be parents and not have to be carers for Addy and they can just enjoy all the fun
03:25
bits like every other parent. She loves Christmas so much and she loves the lights and she loves
03:32
Father Christmas and so we go for it and that's amazing because I think looking back we will
03:44
have known that we've done all that we can to make her happy and enjoy what she can when
03:55
she can.
03:56
[Music]
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