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

SENDcast Episode

Rare but Recognisable: Isla’s FOP Story

with Nicky Muller

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

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