I didn't realise how truly lost I felt until finally meeting other parents in the same situation

Kate's daughter has rare syndrome

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When KATE SKELTON's daughter Annabelle was born with an incredibly rare neurodevelopment syndrome, she didn't know where to turn.

For years, the mum of four, 43, had no clue what the future would hold for them.

Here, she writes movingly of what happened when she finally got to meet other families like theirs.

IT was life-changing when, two weeks ago, Annabelle, 10, and I flew to Amsterdam to meet children like her for the first time.

Annabelle is one of only 652 people worldwide diagnosed with forkhead box protein P1 syndrome (FOXP1), a rare neurodevelopmental disorder that causes cognitive, behavioural and physical challenges.

It has resulted in her having cerebral palsy, autism, ADHD, global development delay, hypotonia (low muscle tone) and challenging behaviour.

I am in awe of Annabelle's determination, fearlessness and resilience. She has defied expectations.

She can walk, dance and ride a bike, is funny, kind and patient.

Although mostly non-verbal, she can talk in simple sentences, she sings beautifully, gives the most amazing cuddles... and has a smile that lights up every room.