Urgent Update: Orla's Devastating Setback & Her Need for a Life-Changing Wheelchair
Hello everyone,
I’m writing with a heavy heart to share a devastating update on our beautiful Orla and to explain why a powered wheelchair is now more critical than ever.
The Emergency That Changed Everything
Four weeks ago, our lives were shattered in an instant. Orla was simply relaxing on the sofa, watching TV, when we heard a sickening snap. Her knee dislocated violently, leaving her locked in unimaginable agony. I have never heard a child scream like she did; it was hours of delirium and pain before an ambulance could get her to the hospital.
In that one moment, everything changed. Orla has not stood or taken a single step since. She is now completely bed-bound in our living room. One minute she was a happy girl watching television, the next it was as if she had been in a terrible accident.
Why a Powered Wheelchair is Not a Luxury—It's a Necessity
We’ve had some questions about whether Orla is too young for a powered chair. The truth is, for a child like Orla, it is the only way she can gain any independence.
Despite her complex needs, Orla has the wonderful capacity to understand and operate a powered wheelchair. However, she does not have the physical strength to propel a manual wheelchair herself. This means she is 100% reliant on us for every single movement, offering her zero freedom or choice.
This chair would be truly life-changing because it would give her:
* Freedom at Home: She could finally move from room to room on her own.
* Access to the World: We could get her outside for fresh air, to the shops, and to play with other children independently without needing me by her side or pushing her.
* Dignity and Independence: She could do simple things we all take for granted—reach for something in a cupboard, play with the dog and take him for a walk, or even just follow her friends without needing an adult to push her.
* Essential Support: The chair provides the postural support she desperately needs for her conditions and her upcoming surgery.
An Investment in Her Future
We have had a professional assessment with both a physiotherapist and an occupational therapist. They confirmed that Orla not only needs this chair but is fully capable of using it. They recommended this specific model that will "grow with her" into adulthood and will fit in with her families lifestyle, Sadly, the Wheelchair services cannot provide one for her.
Because she is bed-bound, this specific powered chair would allow us to slide her directly onto it from the bed, giving her instant mobility and access to her home for the first time in weeks—something her current chair cannot do.
A Heartbreaking Reality and a Plea for Hope
Orla turns 11 in two weeks. It is heartbreaking to see her with so much hope, believing she will soon take her brace off and never see it again. She actually has no idea what’s ahead of her not just over the next two years but for her whole life.
We are relying on the ambulance service for basic appointments.
Orla’s future looks daunting, but we are determined to bring her joy, freedom, and the quality of life she deserves.
We have a quotation for the chair, attached, and we have fundraising efforts underway. Every single share and donation brings us closer to giving Orla the independence she so desperately needs.
Thank you for your love, your support, and for helping us change Orla's world.
With deepest gratitude,
Faye
Hi guys , I feel devastated with all Orla is going through and to write that she is already starting to slowly & painfully loose her mobility…
We’ve just had the news that Orla sadly can’t get the powered wheelchair she needs on the NHS. Unfortunately, after being referred from her physio for a powered wheelchair and waiting for an assessment, we’ve just found out Orla doesn’t meet the criteria for a powered wheelchair through the NHS which is crazy!
Physio has said this is very common for NHS to turn people down and now the process is to go through a charity which is a lengthy process.
This wheelchair will change Orla’s life not only in the home with every day independent living but to give her the freedom and independence to enjoy the outdoors too (something she isn’t able to do much of )
We’ve applied to a charity who are incredible and may be able to fund up to £10,000 , if they can it will take up to 6 months for them to raise the funds for Orla.
I have to do a go fund me for the rest of the funds (as most parents in our situation have to do) Our application to the charity is going through as we speak.
Orla was upgraded to a self propelled wheelchair last year which we really hoped would give her the independence she desperately needed/ dreamed of.
Orla was so looking forward to her independence but sadly it came as a shock and heartbreaking disappointment to her as she isn’t able to get very far in her wheelchair,
She doesn’t have the core strength or upper strength to move herself and it puts tremendous strain on her trying to do so.
She’ll never stop trying but like walking , she doesn’t get very far at all in her current wheelchair and it’s not fair on her.
Orla has needed a powered wheelchair for so long but due to being misdiagnosed , her needs were not understood and she was turned down for physio time and time again over the last 3 years.
Orla's mobility needs have now become so severe it’s heartbreaking.
We’re a family who love the outdoors but over recent years have struggled to get Orla outdoors as much.
We spend alot of time in wales where my mum lives and although Orla loves spending a lot of time there , it’s so frustrating and upsetting for Orla not being able to get out and explore or have the fun she deserves. We’re so very limited to what we can currently do to give Orla a good quality of life.
This wheelchair has been recommended for Orla to both meet her needs in the home and outdoors.
I’ve written a little about my amazing daughter for all who don’t know her..
Orla was born with a rare genetic syndrome called Kabuki syndrome.
With Kabuki Orla has many other conditions including hip dysplasia , Patella Instability, hypotonia , hypermobility , a heart condition (VSD) , complex hearing loss , a single kidney, global developmental delay , she has severe choking episodes. Global developmental delay , Orla has an anxiety disorder called Selective mutism’ & she suffers ptsd from all she’s been through at the hospitals.
Her conditions together take over her whole life leaving her struggling & poorly in many ways many would never understand.
Orla’s difficulties began at 5 days old when she was very weak, poorly and not thriving. From that day in hospital she hasn’t really had a break since.
It took years to find out the cause of Orla’s difficulties. More and more problems became apparent the older she got and still are becoming apparent.
Hardly a week of Orla’s life goes by that she isn’t at an appointment for one of her many existing conditions.
Getting Orla to the appointments in themselves is so difficult in our current situation.
I could write a million stories of how we get stuck in her current wheelchair when we go out but it sounds like a sob story & no one would ever understand unless they were with us or are the strangers who sometimes help us if we’re lucky.
Our whole world collapsed recently when I had the devastating news that Orla’s knee caps are severely dislocated with tendon / ligament damage and her right thigh bone twisted too. This had been put down to Orla’s existing conditions for the last few years leaving her damage to become so severe before it was taken seriously at the hospital
I am still in shock and can’t believe this is happening to my daughter, especially after being reassured for so long that Orla’s knees were okay and it was her existing conditions.
What’s ahead now is all such a shock and so much to process and it’s tragic for Orla
we’re currently working so hard to keep her legs strong.
Orla’s been through so much in life to even be able to walk which was a miracle. No one knew if she would ever walk but she defied all odds. She’s already had multiple complex surgeries for her hip dysplasia as she didn’t have a hip socket on one side and the other wasn’t fully formed. She
still suffers with hip dysplasia as they were not able to give her the final surgery she needed / may also need.
Orla loves walking so much despite her struggles and although she doesn’t last long , she loves to have a sensory walk/ little run feeling the ground with bare feet , she loves walking on grass bare foot..
The two years of major complex surgery Orla has ahead of her was agreed but the surgery could very much leave Orla instantly immobile.
Because of Orla’s existing conditions and muscle weakness this means she wouldn’t be able to do the rehabilitation/ physio needed and vital for her recovery after surgery.
Also , the surgeons have advised they may not be able to get the surgery right as it’s so complex and they’ve never done this surgery before!
They know this is bad but don’t even know fully how bad it is yet and won’t know the severity of what’s going until she’s in theatre.
Surgery / recovery will also be extremely painful and horrendous for her.
We have another huge meeting coming up with all 3 surgeons and some expert physio’s & occupational therapists, with there being so much doubt on Orla’s recovery , they’ve called the expert physios in for their opinion.
If they go ahead her surgery will start at the end of this year / beginning of next year and will be at least two years of surgery / recovery / rehabilitation on one leg then all over again on her other leg.
Without surgery Orla will continue to loose her mobility and live in the pain she lives in which is heart breaking and horrendous at times, it will also become worse for her over time.
No one can tell me how long Orla has left to walk and Orla has no idea she’s not going to be able to walk forever
Orla’s knees have been getting weaker for the last 4 years and it’s heart wrenching to see her not be able to do the things she used to be able to do and the pain and discomfort she now lives in.
To be able to give Orla what she needs which will come with so much joy for her would be everything to us and more.
Please help if you can , it would mean the world if people even put a pound in for my daughter.
thank you so much for reading
Faye
the final quote for Orla’s wheelchair is £17,877.60
Organizer
Faye E
Organizer