I hardly know where to begin with memories of Christine – there is a saying “memories are ours to treasure” and I treasure so many of my memories of my long friendship with Christine. However, I would like to remember her patience with us, the families, using gentle persuasion to help parents make the right choices for their child. My experience was way back in 1994 when, as a family, we’d had very little actual contact with the Society following Joanne’s diagnosis with Morquio in 1989; I should add the lack of contact was purely down to my reluctance to engage with the Society which I did eventually overcome!
Christine phoned me one day, completely out of the blue, probably in the Spring of that year to tell me about another charity, the National Holiday Fund, which organised trips to Disney World in Florida for disabled children and she wondered if Joanne would like to go. Joanne was eight-years-old at the time and, apart from occasional overnight stays with friends, had never spent any time away from home so, as you can perhaps imagine, my initial response was that I was sure she’d love to go but she couldn’t possibly go without me! Christine reassured me that Joanne would be extremely well cared for and would have a one-to-one carer on the trip, whom I would meet when I took Joanne down to join the trip at Gatwick. I can’t remember how long the call lasted but by the time I hung up, Joanne’s name was down to go to Disney World!
Needless to say, Joanne had the time of her life despite being the youngest by far, in the party of 15 children and 15 carers who flew out to Florida in November 1994, and I think that early taste of independence contributed to her sense of adventure and confidence which is still evident today.
I think this memory demonstrates Christine’s patience and persistence in achieving the right result for the MPS patients whether it be for a fun and life-enhancing experience like the Disney World trip; in far more serious situations involving patient health and wellbeing or when challenging government departments, hospitals, social services, etc. to do the right thing……and we all know she was a force to be reckoned with and thank goodness she was on “our” side!
Judith Evans, Chair of Trustees, MPS Society
For our 40th anniversary we are focussing on different aspects of the MPS Society that make us who we are. In November our focus is our founder, Christine Lavery MBE. Christine led a remarkable life and in May 1982 established the MPS Society after her son, Simon, passed away following a diagnosis of MPS II Hunter disease. Visit our website to read about Christine or find out more about 40th year celebrations.