Orla Rae

30/08/2025

I really enjoyed the 3 hour course I did this week, I enjoyed so much being part of something again! It reminded me of my training for the youth offending service and how much I loved that.

It made me realise how lost from the outside world I’ve become over the last 10 years , since Orla’s difficulties began and took over 🫶 She’s our whole world leaving us no time for anything else , not even each other at times 🫶

Reflecting on things though I think I’ve held it together so well over the years. There’s been no one who could of done the job I’ve done with Orla , no could be by her side at the endless hospital appointments or take care of all her daily/ nightly needs or do for her what I do every day and night because she needs her momma 💞

Orla needs me by her side almost 24/7 and as much as we appreciate the 20 hours in care help we get a month , I’d never dream of her doing any of it without me by her side 💞 I’m there for her all the way.

Being a full time carer really is more than a full time job. Even when Orla was at school , the little time you do have (if it isn’t taken up by appointments) that tiny bit of time you get to yourself , you , your mind and your body have to rest and recover quickly before you’re on full duty again.

A lot of us special needs parents live on the edge constantly and I don’t know how we do it 🙏💪🫶

I’m feeling so proud of myself for the happy and uplifting person I am because that has made my children such happy and uplifting people too 🥰🥰

We go through so much daily with Orla but we get through it daily and get her though it too 🙏
I believe the only thing to get her through all that she has to come is keeping her uplifted and happy (meaning acting like Me tumble or Ms Rachel 24/7 😂)

She has the most wonderful imagination and she really is the funniest little person ever 🥰 she gets down a lot every day with things out of her control but her her resilience and her personality soon shine back through. 💫

Although I lost myself from the outside world I’ve never lost myself from what matters the most ,my children 🫶🫶🫶
I love nothing more than our family world and the Kabuki world that Orla has introduced us too. I wouldn’t change it for the world I just wish we could make things better for our princess 💛💗💚

06/08/2025

Today was just another devastating day for my precious Orla Rae. After not having a bath in so so long she was so excited to try this bathing cushion recommend by occupational therapy.
Orla can’t get on and off a bath lift , lift her legs up and twist herself round into the bath or vice versa. OT thought this might be better as it cushions her meaning she can lean back and it will be easier for me to lift her legs whilst turning her whole body and release her down into the bath. We managed this , but whilst lowering her it slid her into the bath like a slide which was fun for her but it slid her off the bathing cushion. By now she’s in the bath and it was incredible! A feeling I can’t describe seeing her so happy in the bath 🥹🥰 but getting her out was a different story! It was traumatising for her, so scary and dangerous , I had to jump in the bath and pull her whole body weight back onto the cushion again and again as she kept sliding off, it was so scary , thank god I had help 🙏 She was and still is so shaken up I’m so gutted for her that this didn’t work either 💔 the last couple of days have been heartbreaking even though we’re still seeing the good in our days 🙏🤍🫶
I’m so grateful our beautiful cousin contacted the most incredible charity for a wish for Orla , all Orla wishes for is a hot bubble bath like everyone else 🥹 I’m praying they can help us 🙏🫶💗💚

16/06/2025

We’re having a nightmare of a morning as Orla’s stairlift has broken (again) so she’s currently stuck upstairs 😭
She was sobbing her heart out earlier 🥹 She’s so frustrated she just wants to get downstairs and in the garden.
We’ve managed to have some fun in her bedroom whilst we’re awaiting the engineer , hope he hurries! 🫶

15/06/2025

whirlpool bath cleaned out and ready to be re filled for Orla 🫶 this is both for Orla’s hygiene and Hydrotherapy.

Orla hasn’t ever been able to get in and out the bath without being lifted and a hoist doesn’t fit in our bathroom making it impossible for her to bathe!

I used to have set up a paddling pool daily in our kitchen but since the day Orla’s CT results came back I knew she hydrotherapy as a matter of urgency 🙏 so I had to up our game 🥹🙌

This is really helping Orla to be mobile and free in water! Seeing her so free and to be able to actually relax in hot bubbles is absolutely everything and more 🥹🙏💗

It does take it out of her the following day sometimes leaving her unable to move and in so much pain but we have to keep going 🙏 This is also helping her to loose weight which is vital to give Orla’s knees a chance and for her to last as long as she can on them 🥹🙏🫶

14/06/2025

As this page was set up for me to fulfil Orla’s and many more children’s dreams , which we did and what we did was beautiful and will stay in our hearts forever 🫶 I’ve decided instead of closing the page down , to change it into a page all about Orla 💗💚

Orla is going through huge , life changing challenges and has been for the last few years.

So much support has been flooding in from strangers through Orla’s Go fund me page that I wanted to give those people an opportunity to follow Orla’s journey if they wanted to.

I’d love the people who’ve donated to Orla’s new wheelchair fund to be able to see her actually move forward on her new wheels so it felt a good place to do so rather than my personal profile 💗💚🙏

Please feel free to unfollow but I’d love you to stay and follow my beautiful girls journey 🫶

24/10/2022

❤️

"When I’m dancing, it makes me happy because for that moment I just get to focus on dancing, and I really enjoy it." 💙

Student Ava Davidson, aged 11, returned to dance with a blade after a life-threatening tumour in her leg resulted in her having to have the limb amputated.

We're so proud of Ava's bravery and drive to not only get back to dancing, but also inspire many others to Find Your Dance Space!

Thank you for supporting the campaign so far and let's continue getting more people dancing 💃

The Daily Mirror has featured an article on Ava learning to trust her blade and self. Follow the link to read more and to follow our campaign 👉 https://bit.ly/3SnvgqK