“Ebony absolutely loves Andy’s!”

My name is Fiona and I’m Ebony’s mum.

We first found out Ebony had Cystinosis when she was 18 months old, it’s a disease where she has lots of treatment throughout the day and during the night. However, it’s never stopped Ebony, who is now 8, from being the bubbly and lovely girl that she is.

We’ve been coming to Andy’s ever since Ebony was two and she has loved it ever since she set foot in the hospice for a tour.  I’d been turning the hospice down for several months as I, along with many others, associated the hospice as a place where people come to die. It was hard for me to accept that Ebony needed this level of care and we wanted to look after her ourselves because we wanted to spend as much time with her as we could. However, our key worker convinced us to go on a tour at the hospice, and the minute we took a step in there, Ebony’s face just lit up – right then, we thought, “this is it, she needs to come here and she loves it”.  She still goes now and she absolutely loves it.

When Ebony is at the hospice it gives me a chance to rest and have a full night’s sleep. Ebony requires treatment three times a day and a couple of times throughout the night, so I don’t get the chance to fully rest. It also gives me and my husband some time to spend with Harvey, our younger son, to do things he wants to do where Ebony may struggle.  I feel at ease leaving Ebony at Andy’s as I know she is not only safe at the hospice, she is happy being there.  To her, it’s like a mini holiday.

She doesn’t get to sleep anywhere else because she gets machine fed through the night and because of this she wets the bed and has to wear nappies. She also needs her medicine during the night so family members struggle to have her. She is basically with us all the time, so when she goes to Andy’s it gives her a break as well.

Ebony’s condition means she gags on a lot of food and she doesn’t like to eat what other children have, such as crisps and yoghurt.  I still pack these for her for lunch every day, even though they come every time, because Ebony wants to fit in with other children by sitting in the canteen with them all, and having the same food.  One of the things Ebony looks forward to the most when she visits the hospice is the pickle tray that the catering staff personally make for her, as well as Marmite on toast, which is Ebony’s favourite!  When Ebony comes to the hospice, she doesn’t have to try to “fit in”.  She is able to eat the food she enjoys and be herself.

I know she is happy when she is at Andy’s.

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