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Leah (14) has Kleefstra syndrome, Leah is our shining star! #KleefstraAwareness

Fiona Heslehurst

Leah was diagnosed with Kleefstra syndrome in 2007 when she was a year old, we were told that Leah was number 35 in the world. There are now approximately 1000 diagnosed with KS worldwide. Leah’s diagnosis inspired parents Fiona and Chris to set up for families affected by this rare disorder, to ensure that newly diagnosed have information and support 💜

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