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 (MVA) – 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 (MYO5B) was isolated as recently as August 2008, and as a Charity we are now concentrating our efforts on funding research into finding a cure for this rare condition.
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 intravenous feeding (TPN) and courageously overcame many obstacles, including numerous infections, ascites, oesophageal varices, an intracranial haemorrhage and a craniotomy. 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.
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.
We have made a number of donations towards research into MVA. We recently awarded a significant research grant to Prof. dr. S (Sven) C. D. van IJzendoorn (PhD), Professor of Cell Biology and program leader of the Center for Liver Digestive & Metabolic Diseases at the University Medical Center Groningen (UMCG) in the Netherlands. Having donated to Sven and his team in 2016, we are extremely grateful that MVA continues to be at the forefront of their current research and we share their excitement at this promising new project. The truly overwhelming generosity of our supporters has allowed us to make this incredible donation. We cannot put into words how much it means to us as a Charity. In 2012 we were thrilled to be able to make a £26,000 donation to GOSgene to investigate new genetic causes of MVA. GOSgene is a GOSH and UCL Institute of Child Health (ICH) Biomedical Research Centre initiative, designed to help clinicians to identify new genetic causes in rare undiagnosed disorders. The research was undertaken by Dr. Neil Shah (Consultant Paediatric Gastroenterologist) along with Professor Phil Beales (Professor of Medical and Molecular Genetics at the Institute of Child Health, UCL) and Dr. Chiara Bacchelli (Senior Research Associate and GOSgene Project Manager at UCL).
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.