I am the father of a Menkes child, my son Carter. He's almost a year old & was diagnosed with the illness shortly after birth. Although he wasn't actually tested for this, there was a significant history of the condition in his mother's family so it was a relatively simple conclusion to draw once the symptoms manifested themselves. It was a shock for us as his mother already has another son (now age 4) who has no symptoms whatsoever, so we thought that we may have dodged a bullet with Carter, but sadly this wasn't the case.
I originally started researching the condition prior to the birth of her older boy so that I had an understanding of the nature of this illness. Since the birth of my own son, I have endeavoured to find out as much information as is available online, which has been made somewhat easier thanks to sites like yours & the support of other Menkes families on Facebook.
As you know, Menkes is quite a rare condition & there is still much to be learned regarding treatments & suitable testing. Here in Australia the situation is even worse as the number of cases is extremely small & as such there is very little awareness, both in the community & the medical profession.
It is my goal to establish awareness here for Australian families, where they can receive support from others who have been through or are going through this situation. I also want to promote awareness in the community and generate the funds needed to push for more testing & research.
Australia has a proud history of medical breakthroughs & our research facilities match the best in the world, but without awareness rare conditions like Menkes can be easily overlooked. I want to change this, not only for Carter but for others here now & in the future.
I want Carter's legacy to mean something, for those families suffering now & those who will be affected in the future. Our angels go through so much & many families feel isolated because unless you're going through this there is no real way to fully understand.
Carter's Father Craig
Posted: September, 2010