Wilma, trustee of the MPS Society, mother to an MPS child and great friend to Christine, shares her memories of a special woman.
I was with Christine for the weekend at the beginning of December 2017, as it turned out, for the last time. It was a very busy weekend, governance training all day on the Friday at MPS House, the MPS staff and Trustees Christmas dinner on Friday evening, and the Board of Trustees meeting all day Saturday. As usual, I stayed with her for the remainder of the weekend. She was happy, on top of the world. A chest infection which had troubled her for months had finally gone, and, more importantly, the latest biopsy had shown she was clear of myeloma. She was well and full of energy, enthusiastically making plans for the MPS activities in the New Year. She was going to Tel Aviv for the first time in January, and, in particular, she was looking forward to the annual MPS WORLD Symposium in San Diego in California in February. She was very excited about the plans beginning to take shape for the celebrations to mark the 25th anniversary of the Childhood Wood, a fun packed, fundraising event at the end of June this year. She was at last content, in peace of mind about the future of the MPS Society for which she cared above all else.
"I became more of a personal friend to Christine during this time…and central to our lives was the MPS Society."
My husband Peter and I first met Christine and her husband Robin in June 1982. Our young son, Gethin, was nearly three years old and had
been diagnosed with MPS I Hurler syndrome, in May 1980 at the age of ten months. We had never heard of such a thing, and no internet in those days! For the next two years we were desolate, we began to think we were the only family in the world with something called mucopolysaccharidosis. Then, by chance, in Guy’s Hospital we met another MPS family who told us that a family in Little Chalfont whose son had MPS and had recently died, had set up a support group for MPS families. We phoned the telephone number given immediately on returning home and arranged to meet Robin and Christine Lavery. I shall always remember Christine’s first words, she turned to Robin and said of our son Gethin, “he is a typical three year old Hurler”, and we had thought there was no one else in the world with MPS. Their son Simon who had MPS II Hunter disease, had recently passed away, aged seven. Not having had any contact with any other MPS families, and thinking there must be others, they set about finding other MPS families and eventually contact was made.
At this point Robin and Christine held their first fundraising event, a coffee morning around their kitchen table, which realised £25. A big decision had to be made, should this princely sum be put in the church box or should they be brave and proceed to start a support group. Thank goodness, they began the support group, and the MPS Society was founded. Within weeks the first MPS Newsletter was sent out and in September 1982 the first family conference with 50 families attending was held in Birmingham, barely four months since the speck of an idea had emerged in the minds of Robin and Christine. It transformed the lives of MPS families, just to be together and share experiences relieved the isolation, we were no longer alone. Sadly, our son Gethin died in December 1984, aged five and a half. Peter and I knew we had to remain close to the MPS Society to contribute to its progress to support others.
The period since 1982 to the present time has witnessed the greatest technological development and the MPS Society has evolved accordingly. What started at the kitchen table is now known in very many countries worldwide. Enzyme replacement therapy has changed the lives of so many MPS children, many now young adults; and those with other related diseases. Christine devoted her life to develop the organisation, working closely with doctors and pharmaceutical companies all over the world. Sadly, tragedy struck Christine’s life when Robin died suddenly in January 2008. He had been her staunch, unfailing support during a time when the MPS Society, of necessity, became ever more demanding to keep pace with the rapid progress of medical research. I became more of a personal friend to Christine during this time, and following the death of my husband Peter in 2009, we became closer, supporting one another, and central to our lives was the MPS Society.
There was a further setback in Christine’s life in December 2015 when she was diagnosed with myeloma. I say setback, because she refused to let it affect her life any more than that. She had to undergo major surgery to repair her broken back, the myeloma having damaged the skeleton, and she endured months of harsh chemotherapy and a stem cell transplant. She did not ever give in to this most debilitating condition, travelling the world whenever she could possibly do so, to establish and nurture the work of the MPS Society. As Trustees we pleaded with her to refrain from such pressure. The appointment of Bob Stevens as Director of Operations and Governance in April last year, and with whom she worked closely over the following months, finally satisfied her that she could begin to step back. At last she was content that the Society was in safe hands and she was looking forward to introducing Bob to all the important contacts in San Diego in February. She promised me that she would begin to do less, even to the extent of contemplating some form of retirement in the coming year! One big task remained, she said, the volumes of paper of the story and history of the organisation needed to be archived, to ensure her legacy.
Her sudden death stunned us all. But Christine can rest, and be assured that Bob and the team in MPS House, and the Board of Trustees, have been working tirelessly to ensure that Christine's beloved MPS Society will endure and continue to thrive.
Wilma Robins - Trustee