About Us
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 £35,000 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.

We have recently funded a PHD student at Kings College Hospital to carry out research into mutations of the MYO5B Gene and we have been granted £20,000 by Jeans For Genes, through the Institute Of Child Health to continue this research. Our short to medium term aim is to set up a diagnostic centre in the UK for MVA. This is just the first step, and we are certain that this research will make a difference to the way MVA is diagnosed worldwide.

Also, as part of our 'making it better' ideal, we 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.