Henley's journey with Peutz-Jeghers Syndrome - PJS

Henley's journey with Peutz-Jeghers Syndrome - PJS Follow Henley's journey with the rare condition of Peutz-Jeghers Syndrome...

A huge thank you to the Pyjama Fairies for Henley's surgical hospital gown.Whenever she wears it, she gets so many compl...
29/04/2026

A huge thank you to the Pyjama Fairies for Henley's surgical hospital gown.

Whenever she wears it, she gets so many compliments. We still havent finished counting how many little cats heads are on there! Maybe we'll finish it off on her next routine procedure in 2 years!

Standard post op photo with doughnuts! The one thing that keeps her going through the whole process....Nearly a 2 night ...
29/04/2026

Standard post op photo with doughnuts!

The one thing that keeps her going through the whole process....

Nearly a 2 night stay in hospital following her procedure, but luckily we got home just after midnight.

A bit traumatising this time round but we got through it together...

Back again after 2 years.....The bowel prep begins and the scope is tomorrow.But in the meantime - keeping occupied with...
27/04/2026

Back again after 2 years.....

The bowel prep begins and the scope is tomorrow.

But in the meantime - keeping occupied with Lego!

Raising awareness for spreading love to all those living with rare conditions for
28/02/2026

Raising awareness for spreading love to all those living with rare conditions for

Ready for this year's Rare Disease Day!A herd of zebras heading into Henley's class, ready to raise awareness of her and...
26/02/2026

Ready for this year's Rare Disease Day!

A herd of zebras heading into Henley's class, ready to raise awareness of her and millions of others day.

9 today!How did she get so grown up?!?!
24/02/2026

9 today!

How did she get so grown up?!?!

Henley is coming along in leaps and bounds with her confidence.Last night she took part in her first show with a dance c...
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...

Today is officially Peutz-Jeghers Syndrome Awareness Day!We're now onto the 4th year! The rare condition that has captur...
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 🦓

Today we found a freckle that's just appeared.... on the palm of Henley's hand ✋️
17/05/2025

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

Happy !!!
08/03/2025

Happy !!!

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