Darcey and Eden's story: Care for increasingly complex needs
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Darcey and Eden are identical twins who are full of beans, but have gone through a lot already in life. Their mum, Katy, explains the impact of Rose Road's long term support as their needs become more complex:
"Darcey and Eden were born prematurely and spent most of their baby lives in hospital – we just knew there were lots of things not quite right. At a young age they were both diagnosed with a learning disability and autism, and eventually with 'KBG syndrome' after genetic testing.
As they've gotten older, their needs, both behavioural and medical, have become more complex.
Darcey has developed epilepsy, and medical interventions cause intense mental trauma and prolonged periods of selective mutism and, after dental surgery, a refusal to eat which led to her needing to be tube-fed through a gastrostomy.
Eden has congenital heart valve defects and has needed multiple surgeries to keep her well. She’ll undergo her fifth open heart procedure just before this Christmas.
Their journey with Rose Road began years ago.
The girls have attended Rose Road’s summer holiday activity clubs for years, and in early 2025 started to receive outreach support. They love it and have so much fun! They collect the girls from home, which I appreciate, and take them out and about to places they enjoy, from the beach for ice creams, to visits to local farm parks.
We have now also begun overnight respite nights at Rose Road.
They can take all their toys with them and make it a home from home for the night, and they’re especially excited to stay in the twin room as they are so used to doing everything together.
Plus, Rose Road staff have the training and expertise to manage all the girls’ medical needs, from tube feeding to managing seizures, so I don’t have to worry. They just take care of everything and don’t bat an eyelid.
As their needs have become more complex, Rose Road have just been there all the way.
For me, it gives me a few hours for myself, can just keep up with life at home or do something with my other two girls.
It’s really overwhelming at times as a mum, knowing what they go through.
As a parent you just want to know your children are getting every opportunity to be happy and feel safe, especially when their mental health is so susceptible to trauma.
I’d just feel so sorry for them if we no longer had Rose Road, because it gives them their hope and joy for the week. They’re just so happy there and well looked after".
Please donate to our Christmas Appeal, and support more families like Eden and Darcey's to receive the long term specialist support and care they need to thrive, no matter how complex their needs.
