Lacey has Cerebral Palsy and Dystonia. She is severely sight impared and fed through a mickey button. We found this out shortly after Lacey was born through appointments with consultants. Every day is a struggle as we have to constantly think and plan where we are going, i.e. disabled access, changing facilities etc. It can also be quite distressing as Lacey can get quite upset and unsettled when her dystonia kicks in as this makes her stiffen up and arch her back.
People don't understand Lacey's condition so when they say hello to her they wonder why she doesn't say it back, so we have to explain and this can become so draining. We have to think of sitting options when we visit family and friends as she can't just be sat on a chair or the floor, she has to be constantly supported as she has no head control and doesn't understand the dangers around her. We are constantly at appointments, in and out of hospital, we are very busy every week.
Lacey has to have routine. As soon as we take her out of her routine she can get upset and will usually start to get poorly. Our complex needs nurse mentioned Zoë's Place to us, and at first we said no. We thought we could deal with Lacey 24/7 and we didn't need a break. But Lacey doesn't sleep very well, she can be up from midnight ready for the day. This, on top of everything else began to take its toll on myself and Lacey's dad, so we decided to give Zoë's Place a go.
Lacey loves human interaction and is very nosey, so when she goes to Zoë's Place she is fussed over and given attention constantly, which she loves. She loves listening to the other children there as well. Zoë's Place has been a life saver for us, we get 2 nights a month child free so that we can catch up on sleep or be able to go out, not as mum and dad, but as boyfriend and girlfriend. No one else can look after Laxey, so it is not like we can leave her with our family. I know she is in safe hands at Zoë's Place and I feel very comfortable leaving her there.
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