“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 2 and she has loved it ever since she stepped foot into the hospice for a tour. I’d been turning the hospice down for 4/5 months as I, along with many others, associated the hospice as a place where people come to die, therefore 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 just go on a tour at the hospice and the minute we took a step in there, Ebony’s face just lit up and 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 fully 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 or might not enjoy. I feel at ease leaving Ebony at Andy’s as I know she is not only safe at the hospice but that she is happy being here as it’s like a mini holiday for her. 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 and so when she comes to Andy’s it gives her a break as well.

One of the things Ebony looks forward to the most when she comes to 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! Ebony’s condition means she gags on a lot of food and she doesn’t like to eat what the other normal children have, such as crisps and yoghurt. However, I still pack this for her for lunch everyday even though it comes back full every time because Ebony wants to fit in with the other children by sitting in the canteen with them all and having the same food. But when Ebony comes to the hospice she is able to eat the food she enjoys and be herself and so I know she is happy when she is at Andy’s.

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