Henley's journey with Peutz-Jeghers Syndrome - PJS

05/10/2025

Henley is coming along in leaps and bounds with her confidence.

Last night she took part in her first show with a dance company. The shyness is slowly fading...

05/09/2025

Today is officially Peutz-Jeghers Syndrome Awareness Day!

We're now onto the 4th year! The rare condition that has captured Henley for the past 5 years and will continue with her throughout her life.

The stomach aches, the polyps, the freckled lips......

My amazing little zebra is strong 🦓

17/05/2025

Today we found a freckle that's just appeared.... on the palm of Henley's hand ✋️

08/03/2025

Happy !!!

28/02/2025

Raising awareness for all the zebras like Henley 🦓

15/02/2025

Yesterday, Henley got to enjoy her day at school dressed up as a member of Slytherin 🐍

Luckily, we've had no issues with Henley's PJS since her last hospital visit in March 2024, which is there reason we've been pretty quiet on here.

We're just happy she's loving life, throwing herself into everything and always has a smile on her face 💕

17/11/2024

Henley loved another day showcasing her bendiness at South Essex Gymnastics Club at their club competition yesterday.

31/10/2024

Halloween ready for Holiday Club!

This isn't today full costume - Henley is saving that for tonight...

20/10/2024

Fearless Henley.

Bouldering...a sport she has fallen in love with.

romfordrockandboulder romfordrockandboulder

07/09/2024

Start of the school year in the UK this week. Henley is heading into Year 3 at Junior School.

05/09/2024