Welcome to The Daniel Courtney Trust Website

We set up our Charity, Making it better - the Daniel Courtney Trust, in June 2005 in memory of our son Daniel, who suffered from Microvillous Atrophy - an extremely rare genetic disorder of the bowel.

Microvillous Atrophy is a devastating condition which is little known and little understood. The gene responsible for MVA has literally only just been isolated (August 2008) and as a Charity we are now concentrating our efforts on funding research into finding a cure for this rare condition. To date we have raised over £25,000 thanks to the generosity of our supporters.

Our son Daniel was a huge inspiration to everyone who met him. He spent his entire life in Great Ormond Street Hospital and Birmingham Children's Hospital, where he fought bravely for sixteen and a half months. He was totally dependent on TPN (intravenous feeding) and courageously overcame many obstacles, including numerous infections, ascites, oesophageal varices, an intracranial haemorrhage and a craniotomy.

Daniel survived an initial isolated liver transplant in November 2004, but very sadly lost his battle for life in April 2005 due to complications arising from a second transplant - a combined liver and small bowel.

The expertise, support and devotion of those at Great Ormond Street Hospital, Birmingham Children's Hospital and Edward House made a huge difference to Daniel's life and to us as his family.

As part of our 'making it better' ideal, we have already funded an internet connection at Edward House and purchased some TV-video players for the Liver Ward at Birmingham Children's Hospital. We have also donated to the Starfish Appeal to help improve facilities at Kings College Hospital's Liver Unit.

Daniel was lucky to have received two transplants in his short lifetime. As Daniel's family we will always be grateful to two very special families who gave Daniel such an incredible gift. Raising awareness of the need for more people to sign the Organ Donor Register is very important to us.

Thank you for your interest in our Charity - we hope you will find this website informative. If you would like to support us, please click on the links under How to Help, or make a donation.