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Isla is a bright, happy five-year-old with a smile that can light up any room! Isla loves flamingos, handbags, watching Gym Stars, playing with her siblings and going to the park to ride her adapted trike. She enjoys playing on the beach and splashing around in the pool.  Anyone who knows her, loves her determination, her courage and her spirit.

Isla was diagnosed with FOP at just a few months old, after searching online about her ‘funny’ big toes. Since then, Isla has lost independence rather than gaining it.  She has suffered significant FOP progression starting with head flares and then onto neck, back and arms. At five years old, she has no movement in her neck or shoulders, her arms are locked bent at the elbow.  Most recently, Isla has developed severe scoliosis which is believed to be due to the additional FOP bone. Because FOP is made worse by the trauma of surgery, any operations are currently out of the question.

Although Isla cannot complete the simplest of tasks e.g. getting dressed, eating, going to the toilet she is hugely determined and resilient. Her friends know about her “special bones”.  They realise that she needs to be careful and take care not to hurt herself.

Isla is helped by a Learning Support Assistant at school. She loves schools and can be found keenly taking part in most activities. She especially loves writing, music and dance.

Just like her mummy, Isla adores horses! Each week, Isla goes riding with the RDA and has recently won South East Participant of the year for her continued enthusiasm and growth in confidence.

We are so proud of everything our little girl has achieved. A successful treatment and cure is constantly on our minds. Our dream is getting closer, we are hugely thankful for any support: large or small.