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A report on personal experiences of the conference from Lynda Morrell…..

In April 2002 I attended my first MPS Conference which was held in Canberra. Ben and I had decided only I would go this time. We thought Sarah was too young to be left for the whole day with strangers. And I needed to concentrate on the long days of lectures without distractions. To me it was a working weekend with the goal to get as much info as possible about MPS Disorders, in particular Morquio IV and meet\network with health professionals and maybe other families.

Ben and I have a son Timothy who is nine and unaffected by MPS and Sarah who has just turned 7 and has MPS IV - Morquio. We are a close family and usually do everything together, so it was hard leaving them, although, I must admit, it was also a little exciting travelling by myself for the first time in many years.

I guess you've got to ask yourself why you want to go to this kind of Conference. What can be achieved from getting together with people of like minds. The problem will not go away as a result. Well, I surprised myself. Suddenly being surrounded by people of like minds was comforting and energising.

I found the Conference extremely worthwhile. Invaluable in fact for helping me understand Sarah's condition and MPS as a whole. Being able to network comfortably with Professionals who have devoted their lives to MPS Disorders was an incredible experience for me.

Personally I wanted to know two things in particular:

1. Whether or not to pursue surgery on Sarah's knees and hips. It is expected that she would need surgery at this stage, but it was undecided what kind of surgery, radical or just maintenance.
2. If enzyme replacement therapy was in the wind for Morquio.

Both were answered.

I was amazed and humbled by the accessibility, approachability and caring of all the Scientists and Specialists involved in the 3 day event. They were constantly "accosted" by parents at breaks and at the end of the days, wanting information about their own situation and always we were received with patience and kindness. For this I can't thank them enough. I initially felt hesitant approaching these people. Being a Nurse myself, I know that sometimes Specialists can appear distant and aloof. But the atmosphere at the Conference was at all times warm, friendly and welcoming. Wow.

I was able to discuss Sarah's surgery with Prof Sillence from Sydney while on my morning walk before breakfast. I was able to talk about Morquio cases to Prof. Ed Wraith from England over morning tea and then speak to Professor John Hopwood, Head of Lysosomal Disease Research from Adelaide, about future developments with Morquio, over lunch. This experience was invaluable.

Socially the event was impressive as well. I remember returning to my bedroom after a long day listening to Speakers and thinking I might just have a long hot shower and have an early night. But a little voice said to me, "come on Lynda, it's important to meet the people, give it a go..". So off I went to a wine and cheese evening and bus tour of Canberra by night. I met Bronwyn from Invercargill. We were two kiwis both missing our families. She became a neat friend over the evening and for the rest of the Conference. That evening I also met Toni, a wonderful young woman with Morquio. We clicked instantly and together with her brother, Ricky became inseparable for the rest of the weekend. Who would have thought it could be that easy to make friends and lifelong contacts. The formal dinner the following evening was also fabulous and fun. At my table sat Toni, Bronwyn, and a Paediatric Opthalmologist who gave me lots of brilliant information and advice while chewing on delicious food!

The weekend ended finally and although exhausted from socialising the level of which I can vaguely remember from my pre-baby days, I was just so enthused and pleased, and relieved the whole exercise had been so worthwhile. I felt such energy from the experience, so much direction for the future.

And what of the future. There is a Scientist in St Louis America studying Morquio disease, Shunji Tomatsu. I have since made contact with him. Just last week he rang our home and we had a conversation about Sarah and his role in future technology. Sarah's Orthopaedic Surgeon, Haemish Crawford appreciated the information I obtained, then went himself to America and networked with experts there and we feel Sarah will undergo surgery that has been researched and assessed and made from well-informed decisions all round. We were given the name of a Paediatrician specialising in metabolic disorders at Starship Hospital, and will be seeing him just this week actually, to discuss Sarah's future needs and possible treatments.

Suddenly we have a huge network of wonderful people that would not usually be involved in our lives that are actually making a difference to our lives and Sarah's future, so that future can be the best it can possibly be!

I would like to take this opportunity, finally, to thank Lysosomal Diseases New Zealand for giving me the chance to attend this Conference and to your commitment to all people with MPS and LDS Disorders and their families. You really make a difference.

Lynda Morrell
Wanganui

29 July 2002

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