Hi my name is Caren and I am grandma to the ‘twincesses’ Edie and Ivie who are identical twins.

They were diagnosed with Rett syndrome in 2023 when they were 3.

I, like most people had never heard of Rett Syndrome until their diagnosis. Rett syndrome is a neurological and developmental genetic condition that affects previously healthy children between 1 – 2 years old. It mainly affects girls and is estimated that 1 in 10000 births are affected.

This means that the Edie and Ivie are unable to talk, walk or use their hands, they are dependent on others for all their needs.

The girls started to lose their abilities when they were 18 months old, we were all extremely worried and bewildered. Initially when they were diagnosed it was a relief to know there was a cause for their decline, but as the implications of the diagnosis sunk in the family were all devastated and worried for the future the twincesses would face. The rollercoaster of emotions we all felt was overwhelming. The realisation that there would be no first words, no first steps and life for the girls was not going to be what we expected or imagined was heart breaking.

** The 'twincesses' during a TUM TUM photoshoot before they were diagnosed. 

Everything I had dreamed of and planned to do with my granddaughters was gone, and I felt cheated. I then read Welcome to Holland by Emily Perl Kingsley which helped me start to accept and process my feelings.

Finding Reverse Rett on the internet was another great source of support. Reverse Rett Is a patient advocacy and research organisation working to bring treatments for Rett Syndrome to the UK.

Currently there are no treatments or cure for Rett syndrome. Due to the research supported by Reverse Rett there are currently clinical trials of gene therapy underway in America and Canada with promising results so far; giving immense hope for the future to the Rett community.

There has been approval for gene therapy clinical trials to start in the UK which is extremely exciting.

I have taken on the South coast 100km Challenge to support Reverse Retts and improve to future for my beautiful granddaughters whom I cherish so much. It has given me a sense of purpose although it doesn’t take away the sadness.

Helping support Reverse Rett and the current research will hopefully achieve the goal of a world without Rett.

You can read more about Reverse Rett Syndrome over on the Reverse Rett website, here. 

Thank you for taking the time to read this, Caren x

**During 1st - 14th September 2024 £1 from the sale of every Tippy Up Sippy Cup will be donated to Caren's Reverse Rett South Coast 100km Challenge fundraising efforts. 

To make a Tippy Up Sippy Cup purchase, click here. 

A note from TUM TUM MUM Suzanne:-

Caren is a lovely running friend of mine.  We huff and puff around the hills of the Peak District along with a small group of friends called the Reprobate Runners.  On these runs, which often end up at a bakery or pub.  We put the world to rights and share each other's life stories. 

I, like Caren, had never heard of Rett Syndrome before it affected her beloved 'twincesses'.  Hearing about her personal struggle along with Edie and Ivies devoted parents Simone & Adam's amazingly strong dedication to their twins has been very humbling.

So if you need more Tippy Up Cups, please stock up now and help her cause if you can.

Thank you very much.

Suzanne x