On Oct. 21, 1986 our first son was born and he had various health complications and heart problems.

Unfortunately, James died 9 days later.

On the Jan. 7, 1988 our second son was born and he was born with two holes in the heart. To get Andrew’s heart repaired we had to fly to Melbourne from Adelaide and this was on a long weekend. Andrew had his operation at the age of 14 days. Andrew had various educational issues while growing up, etc. and he was also diagnosed with being slightly intellectual disabled.

However, in late 2001, our story changed forever.

We were to find out that our first son, James’, heart and brain were removed for research without our permission. However, since then, my wife and I have given our approval for his heart to be used for research while his brain was medically disposed off. As a result of finding out about James, I wrote the first book on Velo Cardio Facial syndrome — that is from a personal perspective, and my book is called “VCFS: Footprints of Hope” and was published in 2004. It tells about my experiences in having VCFS, etc. and other compilations of stories around the world and other information.

In my case, I did not know that I had the syndrome until the age of 43 — I am now 61 and will be 62 in October. I am now one of the oldest people in the world with the syndrome & a major advocate in promoting VCFS / Di George / 22q11.2 DS. At the same time of my diagnoses, we found out that Andrew also had VCFS, and most likely that James had the syndrome as well. Since writing my book I have also spoke at various VCFSEF Conferences in the USA, France and Australia and also spoke at various VCFS Queensland Charity Balls functions so as to promote awareness of the syndrome. If you want to know more about my story etc, you can purchase my book online at www.bookworm.com.au.