Hi, my name is Mim, I am 25 and I am raising funds so I can pay for the intensive neurological rehabilitation I need to become more independent and capable. There is almost no NHS provision for my rare neurological condition FND and only a handful of places in the world that provide treatment.
Typically people with my condition make limited progress and are effectively ‘written off’ - a consultant told me I should go live in a nursing home when I was first diagnosed aged 23!
However, I have beaten all the odds and made so much progress. Going from 5 seizures a day to 1 seizure a week. From bed-bound to working three days a week in my power wheelchair. It’s amazing. But I am still so very limited.
Since moving to Brighton a year ago, I’ve realised that absolutely no one around me lives somewhere wheelchair accessible so I can’t even visit friends and family. Most pubs here are not accessible, and certainly do not have an accessible bathroom. Functions and events are held down a flight of stairs. The beach is not accessible- I can’t even get close enough to hear the waves. On top of being unable to access much of the community, I require constant support from PA’s to function and complete my activities of daily living due to limited mobility and energy. Mostly I am just very isolated.
Since I left hospital in September 2023 after a long three months as an in-patient, I had made steady physical progress. I could stand for a minute, manage a single step, then I could tolerate being in my chair for many hours a day, and walk 20 steps. But as to be expected, over the last few months my progress has plateaued. And I am left very physically disabled and limited.
This is where you come in- the best and only next step is to take some time off of my career and go to a specialist treatment centre to receive intensive therapeutic support. These programmes typically last 2-4 weeks and it’s roughly three hours of therapy a day. My goals are simple - to be able to walk more, stand more, sit more, climb stairs, access more and possibly, maybe, reduce my seizures.
I am immensely proud of my disabled identity and that will never change. However, while the world catches up with basic access needs and tackling deeply ingrained ableism, my continued quality of life depends on my mobility improving.
My current work contract finishes in July. New jobs start September. So - August 2025 - We. Can. Do. This.
The cost is astronomical but so is the reward. I cannot thank you enough for helping make this possible.
The Program - re+active FND program (find out more here)
- The team in LA create an individualised intensive neurological rehabilitation program with a focus on the patient’s specific goals, bringing together a team of physios, occupational therapists, neuro-psychologists and lifestyle medicine physicians who all specialise in conditions like Functional Neurological Disorder (FND).
- There are no treatment programs like this in the whole of Europe, and only a handful of clinicians (mostly Neurology Consultants) will even agree to see someone with FND in the UK as it doesn’t have a pathway on the NHS.
- The treatment program takes place in the specialist centre in LA, and are typically 2-3 hours a day, 5 days a week, for roughly 4 weeks, and each day typically involves 2 or 3 different disciplines. This is all built bespoke for each patient and is reviewed at the end of each week to make sure every discipline is working in an integrated way to have the best chance at meeting your goals.
- Having had an initial remote consultation, I am a perfect candidate for the programme- I have the right attitude and mental strength, I have realistic goals, and owing to the amazing progress I have already made I am clearly very much capable of working towards making meaningful changes. These things are not a given, and many people are not the right fit for this specialist programme.
- The two intensive programmes I have found in the UK are not appropriate for me. One is about 10 times more expensive than going to LA (including all flight and accommodation costs!!) and it has a waiting list for up to 3 years. The other one focuses solely on the physical experience of my condition, is run by personal trainers rather than medical professionals, and doesn’t provide support for making a functional difference to my quality of life.
- Upon completing the programme in LA, I will continue to have international follow ups and can join their FND membership which includes weekly classes and support to continue to make progress once I am back home.
To find out more about my goals and journey up until this point, please follow my instagram @mimonthemend
Thank you for donating to support me in this incredibly important adventure, to help me build a life with opportunities and freedom.