Rare but Recognisable: Isla’s FOP Story with Nicky Muller @Fopfriends

Today is Fibrodysplasia Ossificans Progressiva (FOP) Awareness Day, and to mark the occasion we’re sharing an episode focused on raising awareness of this rare condition. In this conversation, Nicky Muller – a former trustee of FOP Friends and mother of Isla, who has FOP – joins Dale to share practical insight into supporting children with rare conditions and to tell Isla’s inspiring story. Nicky explains that FOP causes the body’s soft tissues to progressively turn into bone, often after flare-ups triggered by injury or sometimes viruses. She highlights how unpredictable this is, and how it affects daily life – particularly movement, risk management, and schooling. A key focus is Isla’s recent transition to secondary school where they discuss difficulties around inclusion, PE participation, breaks/lunchtime, and the emotional impact. Nicky highlights the importance of school-wide awareness and an inclusive culture. Stressing that genuine inclusion is not just about the support in place, but whether a child feels safe, seen, valued and able to belong. “The best one-on-ones are the ones where you don’t even know they’re there. Isla’s voice is the voice that’s heard – it’s so difficult for her to feel not only included but valued.” Nicky Muller Please note that the captions are auto-generated and may contain inaccuracies or mistakes. About Nicky Muller Nicky is an FOP awareness advocate and mum to Isla who is now 12 and diagnosed with FOP as a baby. A former trustee of the UK charity, FOP Friends and a career in Marketing, she combines lived experience with expertise to drive awareness, fundraising and support for families. B Squared Website – https://www.bsquared.co.uk Meeting with Dale to find out about B Squared - https://calendly.com/b-squared-team/o... Email Dale – [email protected] Subscribe to the SENDcast - https://thesendcast.com/subscribe/ The SENDcast is powered by B Squared We have been involved with Special Educational Needs for over 25 years, helping show the small steps of progress pupils with SEND make. B Squared has worked with thousands of schools, we understand the challenges professionals working in SEND face. We wanted a way to support these hardworking professionals - which is why we launched The SENDcast! Click the button below to find out more about how B Squared can help improve assessment for pupils with SEND in your school.