Hi folks, my name is Fi and I live in Greater Manchester with my husband and two little girls that keep my wheels well and truly spinning all day, everyday!
Joining Pathfinders as a trustee gives me all the feels because their mission has been something I’ve longed to see in a charitable organisation for young people and adults with Neuromuscular conditions since I first reached out on the web myself in my barely-teens. Being diagnosed with an ultra-rare NMD called Multiminicore Myopathy at 3 years old consequently meant information and support lacked so much during the vital years of getting my head around what my parents merely termed as having “poorly muscles.” I cannot voice enough the importance in building a support network with people with lived experience, who can tell you how to navigate the very systems we depend on for independent, full lives. I missed out on driving, education and work experience because the people around me believed a) the severity of my condition meant I simply couldn’t even breathe in the direction of such ordinary ambitions and b) consultants labelling me with a life expectancy meant there was no point “wasting time” on striving for a future. The passion and drive was there, but not having anyone to look up to with a progressive muscle condition to show me the possibilities and prospects engrained a lot of self-doubt. Cementing the notion that the naysayers must therefore be right. Looking back on the mindset now, I feel is so incredibly sad. I wasted so much time isolated in my parents’ ground-floor extension, instead of chasing my dreams.
My back story is a prime example of the catastrophic nature of ableism, this I know now. Determined not to let society dictate where and what I do with my life, I set out to change the path I was on and paint my own future. Thanks to key campaigners sharing their own journey’s, I realised my capabilities were limitless with the right support. Sure, many things we strive to achieve living with progressive muscle weakness can take fighting tooth and nail for, but however big the struggle, the end goal is worth it. The key is to keep that end goal in sight no matter how rough the waters get. The feeling you get when you come out the other side is like no other – believe me!
Thereafter I packed up my whole life and followed my heart to America, came back home and finally met “Mr. Right”. I went on to have not one, but two little ones. I fought for 8 years to secure an accessible home, braved returning to education to get the GCSE’s that were owed to me and manage a team of Personal Assistants via a Personal Health Budget (PHB). I also spent 11 years campaigning with MDUK, being part of history improving accessibility for young disabled people in Britain. I am currently learning to drive my own wheelchair accessible vehicle. I am also a proud trustee and Communications Manager for Enabled2Parent, a one-of-a-kind UK-based non-profit, supporting disabled parents and parents with additional needs/invisible disabilities/chronic illnesses since 2019. If you want to gain a greater insight into navigating life and motherhood with a rare form of Muscular Dystrophy, you can find all the ins and outs on my blog – ‘Life Of An Ambitious Turtle.’
I am honoured that my story and what I’ve learnt along the way could give young people with similar conditions the confidence in themselves to believe they can do anything they set their heart on, with the right support, guidance and attitude! As the saying goes; you are only really limited by the constraints of your mind. We are incredibly blessed in the UK to have a variety of schemes that aid maximum independence and control over our lives, unlocking possibilities and expanding knowledge to better your circumstances is key.
I encourage anybody living with a neuromuscular condition to contact us here at Pathfinders for tailored guidance and support from real people, who have faced the same challenges and really do “get” it.