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Meet Lilly. Lilly is a fun-loving seven-year-old who loves a soak in the bath before bed. Lilly has been profoundly deaf since birth and has severe complex needs – meaning that touch is by far her strongest sense.
“Massaging her head, stroking her face, patting her chest, anything that reassures her that you are there and solely focused on her is what she loves,” says Mum, Paula.
“Lilly was born three weeks early, which is classed as full term so didn’t raise any real worries. They do a hearing test before you leave the hospital, which she failed. We weren’t necessarily surprised because she was a little early, but she then failed a second and third test. That is when we first knew something was wrong.” Lilly has two older siblings, Erica, 14, and George, 11, so Paula soon also noticed that her youngest also wasn’t feeding properly. “I struggled for about 11-12 months with Lilly barely gaining weight. I don’t know how I kept her going”.
“She has reflux issues; she just can’t tolerate any fluid by mouth because she doesn’t understand what to do with it. As well as being fed into her stomach with a gastro tube, Lilly has pureed food – not too watery and not too lumpy. Anything that I make that can be pureed, Lilly has – she has Christmas dinner with us which she loves!”
Paula is Lilly’s full-time carer and regularly sees specialists from all over the country. “We had someone once tell us that – ‘oh give her another six months or so and she will probably be walking’. Well, she is seven years old, we know that it is not going to happen”.
Despite having non-stop hospital appointments throughout the past seven years, the family have only just received a diagnosis. “In November 2019 we had an appointment at Guys Hospital in London and the genetics team told us she had You-Hoover-Fong Syndrome (YHFS) Lily is the seventh child in the world to receive this diagnosis. Which, to be honest, is just a name. It doesn’t mean anything”.
Lilly is unable to sit up on her own. “She has lots of floor time which she manages to move around in circles,” says Paula. “She can move front to back rolling over, she can move from one side of the room to the other – I still don’t know how she does it!”.
“We’ve recently got a back brace for Lilly to help with her posture and to help her hold her head. She must wear it for four hours a day and it’s just amazing. It makes a real difference to Lilly”.
Due to Lilly’s complex needs, she can only enjoy her favourite – a relaxing soak in the bath – on visits to her local children’s hospice. Paula first met Chestnut Tree House over two years ago when she was referred by one of her specialist consultants and describes the team as “part of the family now”.
“Lilly is a very cuddly little girl. When the nurses and care workers find out she is going to the House they always fight over who is getting a cuddle first! She loves having a bath, something she can’t do at home, so they always give her a nice bubble bath before bed every night she stays at the house”.
The family access a range of services at Chestnut Tree House. A firm favourite with siblings, Erica and George, is the Chestnut Tree House summer party. “They have met siblings of similar ages, it is nice to meet someone that has a brother or sister, older or younger, that has needs. They can chat to them and they find it easier to talk to them as opposed to when they are at school and people just don’t understand”.
A Chestnut Tree House community care support worker, Susan, also visits regularly to take care of Lilly whilst Paula spends some quality time with her other two children.
“I found that during the Summer Holidays we didn’t actually go out that much because it’s just so difficult to go out and know we have everything we need. Lilly isn’t toilet trained and never will be, that’s ok – but I need to think about going somewhere she can be changed. Then I need to think about if somewhere is big enough or not. Are we going to be out for quite a while? What are we going to need? What have I forgot? If I forget something, then that ruins it, we must go straight home”.
During the August Summer Holidays, Susan took Lilly out for a day of adventures whilst Paula spent some time with her eldest children. “It is really nice to have time with the older two.” Paula says, “they don’t get as much time from me as I’d like to give them. So, when Susan is with Lilly, we do anything, go to the cinema, stop for lunch, anything that is just us three really”.
“Chestnut Tree House is amazing, they really are. They aren’t just there for your set hours, they are always on the other end of the phone. If there’s a problem they always come up with something, even if that is just pointing us in the right direction.
“They are brilliant and they need all of the help and support that they can get so they can continue doing what they do for families like us. It would be heart breaking if I was told that they were going to get taken away from us. I don’t know what we would do without them”.
Now is the chance for a nice soak in the bubble bath. For time together. For local families. For Living. For the Now.