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20 | InTouch AUTUMN 2023 MDA MEMBER, SMA FIGHTER AND NOW A ‘MEDICAL REFUGEE’ For Fiona, her priority right now is settling into her new home – Sydney, Australia, with her husband Steve and two children Ryker and Kaija. “Making the call to move to prioritise my health was not easy. It has meant that my entire family has had to uproot their lives and come too.” your brain can never truly relax as you are spotting hazards all the time”, she says. “This has meant that I have never really been able to help my kids to learn to ride a bike as I cannot run alongside them to stop them from falling or never liked them scootering too far ahead as I could not run to protect them from potential hazards”. However, Fiona, like others with limitations, tries not to dwell on these things a lot. “I try to use my energy on things I can do or believe are possible”, she said. When Fiona was first diagnosed, she joined MDA and her journey of advocacy began. Fiona was a key member of the SMA Reference Group and then led the advocacy efforts to get access to Spinraza treatment for the SMA community. Her fight went public and went all the way through the Human Rights Commission and to the United Nations. She has never stopped fighting for New Zealand children to have access to the lifesaving drug. “When half of all babies born with SMA have just 13 months on average to live, there had to be change. That is not the New Zealand I know”, she says. Spinraza, a medicine used to treat SMA, is a synthetic anti-sense oligonucleotide (a type of genetic material) that enables the SMN2 gene to produce full length protein, Top: Fiona with her son, Ryker, and daughter, Kaija. Above: Fiona (right), her Mum, Diane, and daughter Kaija having fun at the Sydney Zoo. which is able to work normally. This replaces the missing protein, thereby relieving the symptoms of the disease. “It essentially helps you maintain what you’ve already got for longer and in some cases reverses some of the symptoms,” Fiona says. Fiona was also the driving force behind another campaign to fund Risdiplam. This is now at consultation stage with Pharmac owing to positive funding recommendations from the public. For more info on the funding of Risdiplam, see page 3 . For Fiona, her priority right now is settling into her new home – Sydney, Australia, with her husband Steve and two children Ryker and Kaija. “Making the call to move to prioritise my health was not easy. It has meant that my entire family has had to uproot their lives and come too,”she says. While Fiona is deeply upset by the fact that New Zealand does not value medicines and the freedom and hope that comes with access, she vows to continue to do what she can to ensure no other family has to become medical refugees. “I’m gutted that I had to make this choice, but it had to be made. But I am also committed to making the best of the opportunity I now have in Australia,” she says. Continued ...