Poppy and family

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.

In the summer I like going to the beach to make sandcastles with my brother. I like going swimming in the sea and the swimming pool.

I can't wait to go this summer with my new tummy tube, as I won't have to wear a swimming hat to hold my NG tube in place! I also like playing on the beach with my Daddy and making crazy shapes in the sand.

By Poppy Holmes, age 5 and a half.

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.

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.

I can eat food, but can't eat enough to get by without TPN, so I usually have 3 or 4 nights off TPN a week. My favourite food is eggs - but not fried eggs! Being on TPN makes me feel a bit different to everyone else, which sometimes makes me feel a bit sad, but sometimes I don't mind.

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*.

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.

At this time, a jejunostomy tube was fitted.  My parents were told that I would be able to eat normally within a few weeks.  Years down the line and I am still not eating enough to survive on!

I connect my feed at about 7.30am and finish feeding about 3.30pm depending whether I have had a break (for PE, etc).  I have found that I am not as sick at night if I feed during the day.

I have just started secondary school and the change has not been a bad one.  I am doing very well in school and have been put on the gifted and talented register.
I love going to Scouts, camping, on holidays and drama and have been in a lot of shows.