My story is a simple one: had six children, all boys (now five) and one of my sons, Jack, was diagnosed with paediatric GBM in July 2016 and died in April 2018. He was just 21.
We live in Tasmania, Australia.
I have written a book (to be officially launched by Senator Catryna Bilyk [Australian Labor Party senator]) in the next couple of weeks. The book will be published later this month.
The book is nearly 300 pages and tells the story of one family’s fight (and eventual loss) to save the life of Jack. I told him I would save his life and write a book and have kept one of those promises.
I have built a website celebrating Jack’s short life and providing information on the book (www.jacksstory.com.au) as well as my focus now to find a cure for this dreadful disease and stop it from stealing our children.
Noble I know but what have I got to lose?
Regardless of all the research undertaken in recent years, the bulk of Jack’s treatments were those that have been around for 20 years and have an efficacy of zero. We have to make a difference.
I am indifferent as to how money is raised and what research is undertaken by what group as I have a singular purpose to stop this disease from stealing our children and I do not care how that is achieved.
I believe the book is a powerful and emotional story about the carnage of this disease and one that will reach a broad audience (my target is 1M copies and nothing wrong with dreaming …. ??).
I am not sure how you can assist but maybe if you thought it worthwhile help me to promote the book (or advise me how I might do that ..?) through your social media network or other …..? This horror has got to stop. We have done it for leukemia, breast cancer, non-Hodgkin’s lymphoma and many other cancers where once survival rates were low, so why can’t we do it for brain cancer?!!
The book will be available on Kindle in both e and hard copy versions.
Ken Fleming | Family Member | GBM