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 (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. To date we have raised over £75,000 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 intravenous feeding (TPN) 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.
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 will be undertaken by Dr. Neil Shah (Consultant Paediatric Gastroenterologist GOSH) 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). We are hoping to hear some results later this year.
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.