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Family stories

We know that each person's story is as unique as the person they lost.

However, we also know that many people find comfort in hearing from others who have been through something similar.

This page is a work in progress, over time we hope to add and link you to articles, stories and videos. If you have suggestions or would like to share your story, please send us an email.

In this Guardian article, Karen Gardner shares her story and the long journey to identify the genetic cause of her son Tom’s sudden passing at age 15 years.

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