Geoffrey had been just diagnosed. In the days before the internet, let alone Facebook, I knew no one who had a child with Fragile X. We had not heard of it in our family, let alone the local community. Even my local Dr had not heard of it and the catchisms were echoed often, Fragile what? Fragile eggs? and Fragile legs?
I managed to get in touch with two people who inspired my journey - Gail McDiarmid in Sydney, Australia and Lesley, the lady who first set up the Society in the UK. I remember a few phone calls with her, between us in Australia and Lesley in the UK as I set up the Victorian Fragile X support group here in Australia. This is when I first came to meet Jonathan and Rashelle Cohen and their journey with Fragile X. I didn't meet Michael and Anna until we went to Miami in 2012 but from my humble opinion, they are a family working towards treatments towards Fragile X, as well as contributing to the scientific and research developments in Australia.
Geoffrey is now 27. Along the way my marriage to my children's father dissolved, so I devoted 12 years to my children's lives and I got my nursing degree when they were little. I met Greg 13 years ago and together we fostered Peter, a young man 4 months younger than Geoffrey. He has been in our family for 10 years.
Photo: Katherine, Geoffrey and Peter
In the beginning, the Society was a life line for me, the knowledge that there were other families out there just like us. I remain involved via Facebook because I have aunts who are carriers and, if and when the time is appropriate and they are looking for support, I will steer them in the direction of the Society. Even though I live in Australia, most of my extended family, and all of the carrier family live in the UK. I have firm friendships with people in the UK. Gail Henderson was one of the first people to reach out to me, and Sharon Detention Vamp Bourn and Kerry Page are people I converse with on almost a daily basis. They make me laugh, Kerry writing in how she speaks and giving me the space to reminisce from my childhood. Gail and Sharon's boys are around (loosely) the same age as mine so we share a lot that way. I also like being in the Society’s Facebook group to keep up with what's going on in the UK.
25 Years On: Janine's Family Story