Rupert was admitted to intensive care with Heart Failure at 3 weeks old, like a warrior he battled and after a few weeks he was well  enough to return home.

Numerous tests were done to try and determine a cause and it was identified that Rupert has a rare genetic condition known as Barth Syndrome. Like most, I had never heard of it as it is so rare, and always took for granted that I'd just have a healthy baby.

Barth Syndrome is a disease that can cause heart failure, feeding issues, muscle weakness, the inability to fight infections and many other problems. It can occur in any race or socio-economic background, occuring almost exclusively in males and can be diagnosed at any age. The syndrome can be passed on from a female carrier or it can be a spontaneous gene mutation.

There is no known cure for this sometimes fatal, often debilitating genetic disease but scientists are working to change that. Working together the Barth Syndrome Trust helps make a difference in the lives of children and their families.

One day there will be a cure; please join us and help us make that day come sooner.