Personal Stories

Poppy's Story

Hello, I'm Poppy.
I like going to Disneyland in Paris and I like going to Walt Disney Studios because I like going on the rollercoasters and meeting the characters.

George's Story

Hi, My name is George Lumb. I am 9 years old and my dad has been on HPN since before I was even born. I have been asked to write about how I feel about my dad's illness.

I feel quite sad when my dad has go into hospital as I miss him, and I only get to see him for a few hours one day a week, as he goes to Addenbrooke's hospital in Cambridge and we live in York. I do know that he'll feel better though when he comes home again, and I always look forward to seeing him when I visit him.

Lucas's Story

Hi, my name is Lucas.
I'm 8 years old and I've been on TPN since I was born. When I was born, lots of my small bowel was on the outside and now I only have a bit of it left. I had lots of operations and have lots of scars on my belly.

Snaggy’s Syndrome

Shock findings: Snaggy's Syndrome can be "upherited" from children!
In the following case study, Dave Schneider explains why his sons are diagnosed with clinical Snaggy's and how he lives with the shadow of it. Ben and Sam have been on Oxygen at home as well as being enterally fed, first via NG tubes, and subsequently via G-tube, so they have always had Snaggy's Syndrome*.

Daniels Story

Hi all, my name is Daniel Green and I was born in 1996, I am jejunostomy fed. When I was born, half my oesophagus was missing and I had a gastrostomy tube fitted on day 1. Two months later, I had my stomach moved up behind my chest to join it to my oesophagus.

Samuel's Story

Hi, my name is Sharon and I have a son called Samuel, born in 1998 with Total Intestinal Hirschsprungs Disease - this means he has no nerves in his whole intestine. He has been on TPN since birth; he also has a gastrostomy tube and an ileostomy. Samuels's life has had its ups and downs and many trips to the hospital.