Orla's story: Providing the support that's needed as a journey begins
Donate to our Christmas Appeal to help more young people like Orla and her family.
Orla is just beginning her journey with Rose Road, receiving respite support from us while awaiting a decision on long term funding. Her mum, Emma explains the immediate impact of Rose Road's support and why they don't want the journey to end:
"Orla is a happy, bubbly, adventurous little girl.
She does however have quite medically complex needs; she struggles to sleep at night so I'm often up with her, and she needs support with catheterisation, PEG-feeding and taking medication. She recently had long-awaited surgery for a hernia, from which there was a long and difficult recovery.
At home, I have to keep her with me to keep her safe (we live in a townhouse), so she can’t really do that much independently and stay safe; she can’t go out to the local park or round to friends’ houses like her brother can.
We were looking for overnight support for Orla, but we were only being offered a place in other people’s homes, which I wasn’t comfortable with at all.
It felt like one step short of fostering her out to other families, which I absolutely didn’t want to do, and I had no confidence that they’d know how to care for her.
A turning point
We eventually got given six initial nights of respite at Rose Road to try over the summer of 2025.
Handing Orla over to someone new is always difficult, but immediately it felt so right.
She was safe and looked after and made a real fuss of; she got to make and play with friends like her and go out and about to new places. She was also with staff who are trained to manage her needs and are awake at night (on purpose!)
Orla loved it – she learned where she was going and got so excited, especially when she got to stay in the princess room! It gave me a break the chance to have a good night’s sleep, it struck that balance that helped us all manage everything better.
Providing support now, advocating for the long term
It would mean so much to Orla and I for her to be able to continue to have overnight stays with Rose Road, but the funding hasnt yet been agreed.
So I was really happy to hear the amazing news that, not only are the team advocating for us to get statutory funding for regular nights, they are giving us emergency respite nights in the meantime, which I know are funded by the charity. We are so grateful.
And, now that I'm pregnant, we need Rose Road's support more than ever to give Orla some "her-time" while I rest and get ready for the new baby. She only has me to play with and is starting to understand I can't pick her up and get down on the floor quite so much now!
I just want her to have a meaningful connection with the people looking after her, and for there to be all the right policies and procedures in place to make sure she’s safe, and that’s Rose Road".
We need to ensure families can get the support they need, when they need it most. Please donate online here to support our Christmas Appeal and help more families like Orla's begin their journey with Rose Road - receiving vital respite care from a place they trust.
Find out more about our Christmas Appeal here, where your donation will be matched and doubled, to double the difference we can make for families now, and for the long term.
