Search

Ella’s story

Watch Ella’s journey with r(20) – Comic Workshop, Birmingham 2019: Mum Kirstie says: Who knows what the future holds for Ella, all I know is that

Read More

Karen’s story

When we stayed at the hospital in Japan, we were informed that there was another girl who also had r(20) was a patient at the same hospital. Because of her record, Karen’s doctor thought that Karen might have r(20) as well and they were right.

Read More

James’ Story

We have little or no idea what the future holds for James, he currently requires help throughout his daily life and it’s not possible for us to predict how independent he may be as he grows up.

Read More

Share your experience of r(20)

We love receiving your stories to publish on our website. Families around the world can really connect with your personal journey: through diagnosis, treatment, daily life and more.