Parents of girl with childhood dementia say Christmas is "probably going to be the last one" with her

National World - Broadcast Video

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.

Transcript

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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