Connective Issues Fall 2018

ANNUAL CONFERENCE

“THE BEST DECISION WE EVER MADE” Annual Conference is Life-Changing for New Zealand Family

This summer, for the third time since 2009, The Marshall family came from the other side of the world to attend The Marfan Foundation’s Annual Conference. Paula Marshall said that, although it’s financially challenging to travel to the US from their home in New Zealand, she gets tears in her eyes trying to explain how much of an impact the conference has had on her family. “Going in 2009 was the best decision we ever made. The atmosphere is so positive and the opportunity to see doctors who are experts in Marfan syndrome is definitely worth travelling across the world for.” Here’s more about why the family of five travelled to Santa Clara this summer. Why did you first attend the annual conference in 2009? Our daughter, Milly, was 16 months old and we had just received the results of her genetic testing which confirmed she had Marfan syndrome (it has been suspected since birth). I told the cardiologist about the conference and he encouraged us to go. We wanted to see doctors familiar with Marfan and find out the best treatment options. The opportunity for Milly to actually be seen by some of the world's best Marfan specialists at the free health fair was what finalized it for us. Why do you continue to attend the conference? This year was our third conference. If we could, we would go every year as the benefits are so huge. Our last two conferences were prompted by a significant medical issue or decision that we had to make. We wanted to seek infor- mation from the Marfan experts and gain support from the community as a “big” medical event got closer. Five years ago, Milly was very close to needing her first cardiac surgery so being able to talk to doctors like Dr. Hal Dietz and Dr. Duke Cameron gave us confidence in what our team in New Zealand was doing with Milly's care. This year we decided to go to conference at quite short notice due to a rapid change in Milly's vision. Again being unable to access Marfan-specific medical expertise at home was a motivating factor. What are the other benefits of attending the conference? Each time, the friendships we have formed become more and more important. Giving Milly the opportunity to meet other children with Marfan is a big motivator for us and why we are aiming to be back when she is a teen.

THE MARSHALLS WITH TIM AND PAM AUSTIN, AND THEIR DAUGHTERS. SAYS PAULA MARSHALL, “WE MET THE AUSTIN FAMILY AT OUR FIRST CONFERENCE IN 2009. THEY HAVE BECOME WONDERFUL FRIENDS AND HUGE SUPPORTERS OF OUR FAMILY.”

My husband and I also feel a lot less isolated and alone than we did 10 years ago, and the knowledge we’ve gained at the conferences has made us more confident that we are advocating for the best care for Milly. The connections we have established with doctors and friends means we have access to advice, expertise, experience, and support. We have come home from each conference with a huge level of optimism and hope, which is priceless. There is an extremely strong network of “Marf mums” who are a huge support. Sharing experiences, questions, worries, and knowledge at conference and between conferences helps me enormously. Listening to the Teen Council at conference has also allayed a lot of my worries as these brilliant young people exude confidence and knowledge. They are such strong role models for Milly. What about your other children? This year was the first conference that we have all attended and it was wonderful to go as a family. Our younger children, Daisy (8) and Archie (6), although unaffected are very much “affected” by Marfan as appointments, lifestyle changes, hospital stays, and surgeries definitely affect everyone. Attending conference and being welcomed as a family, and to have a fantastic time as a family, is really important. Daisy and Archie both learned that there are lots of other families like ours even though we might not come across them in New Zealand.

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