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.

When he was born he stayed in the hospital for a year before we were able to take him home.

Samuel is on TPN seven nights a week for 18 hours. In 2004 he started mainstream school and is doing well there and the other children have been so accepting of him and his pump.

He was presented with the award for Child of Courage 2003 in Westminster Abbey and this was such an honour for Samuel to receive it. On the day we were thinking about all of our other wee friends out there who face life living on TPN.

Samuel truly is an inspiration to all that meet him and know the battles that he faces each day.

PINNT and HALF-PINNT have made such a difference in his wee life too, meeting adults and children on enteral and parenteral feeds made him realise that he is not alone and that there are others out there just like him and he always looks forward to our meetings.