Caren is a wonderful grandma to ‘twincesses’ Edie and Ivie who are identical twins.They were diagnosed with Rett syndrome in 2023 when they were 3 years old.

"This year I am running for Retts. I have been hoodwinked into running the Manchester marathon for my amazing Rett warriors the twincesses Edie and Ivie.

Reverse Rett is a fantastic charity organisation which supports families after receiving the devastating diagnosis of Rett syndrome and much more. There are 40 runners running for Reverse Rett this year and they all love someone with Retts.

All the money raised this year will be going into genetic research which will hopefully result in a modifiable treatment and eventual cure for this devastating conditon. These beautiful children are locked in their own body unable to communicate with the world.

The sadness and grief after such a life changing diagnosis never leave you. I want my little rett warriors to have a brighter future which is why I am channelling all my efforts into fundraising for reverse rett.

Currently there are two gene trials underway with some positive results so far. An improvement in one symptom for the girls would be amazing. If they could regain a safe swallow and could eat and drink again, to be able to move unaided, or for my wonderful daughter and her partner to hear their daughters call them mummy and daddy would be incredible.

This all seems like a dream but the promising results from the genetic trails give hope that this could become a reality thanks to the hard work by reverse rett.

To read more about their work visit the website.

To read the latest update on neurogene embolden trial, click here.

Or to read a summary of the interim data, click here.

Change is coming amd hopefully in time for Edie and Ivie to benefit.
Thank you for your support it means the world."

During the last 2 weeks of April 2026, £1 from ALL orders will be donated to Caren's Reverse Rett Manchester Marathon.

Read more about Caren's experience as a grandmother to Edie and Evie here.