Family Stories

We are so grateful to our amazing families for sharing these heartfelt, honest and inspirational stories with the world.

In this photo: Avery

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Schinzel-Giedion Syndrome Foundation

The Schinzel-Giedion Syndrome Foundation is a registered UK charity (Registered Charity Number 1186327) established in 2019 by an international group of parents of children with Schinzel-Giedion Syndrome (SGS). Our foundation has been created to represent children with SGS and their families living all around the world.

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Family Stories

We are so grateful to our amazing families for sharing these heartfelt, honest and inspirational stories with the world.

Carla’s Story

Aaron’s Story

Ava’s Story

Stephanie’s Story

Emma’s Story

Sadie’s Story

Avery Jo’s Story

Scarlet’s Story

Nymeria’s story

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Schinzel-Giedion Syndrome Foundation

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