My Story:


From Wellington

Like many other members, my story of life with PID begins at birth. It also primarily revolves around different periods of navigating and managing the challenges that being born with a chronic illness can impose on individuals and their families.

As a baby, I was diagnosed with hypogammaglobulinemia of infancy. Hypogammaglobulinemia is a disorder caused by low serum immunoglobulin or antibody levels. This diagnosis was made by a pediatric immunologist who, after continuing to observe my periods of repeated sickness (despite having already placed me on prophylactic antibiotics, which lasted for the first eight years of my childhood), made clear to my parents that my immune system was less efficacious than it should be at mounting the biological response needed to eradicate sources of infection effectively. Consequently, I have spent from my early life to today fighting off recurrent chest infections and trying to limit my exposure to catching infections from others, as well as managing longlasting bouts of chronic fatigue and a general feeling of being unwell. The unfortunate reality for many IDFNZ patients is that the rarity of the conditions that members present can often lead to inadequate medical intervention or a prolonged time to diagnosis. In my experience, even with the support of expert medical professionals and well intentioned loved ones, living with PID and battling recurrent illnesses is often daunting and profoundly disheartening. While my circumstances are not as complicated or challenging as those faced by many other Patient Members, just having a condition that very few others understand can be very isolating regardless of where it sits on the spectrum of clinical severity. However, I firmly believe in bringing increased awareness to the broader community regarding the toll that PID takes on individuals and their families and the types of support many families desperately require. Like other forms of more well known chronic illnesses, households supporting a child living with PID deserve to feel genuinely validated and supported by charities such as IDFNZ and understood by others in the communities where they live, work, and socially interact. In large part, my desire to help raise awareness and increase the positive impact the Foundation can have on the life trajectories of our tamariki was a key driver for my seeking nomination to serve on the Board. After the struggles other members of my immediate family and I have endured, I am grounded by what I feel is my responsibility to use the hard fought knowledge I have gained during this time to contribute towards lessening the burden IDFNZ’s families face every day. In terms of professional experience, I have come to serve on the IDFNZ board after studying law and politics at Victoria University. Since graduating, I spent three years working in the charitable and social sector for a start-up called ImpactLab. I plan to use the diverse range of experiences I have had up until this point to assist IDFNZ in continuing to strengthen its relationships in the sector and actively look for consistent revenue streams through partnering with philanthropic organizations and high-net worth individuals. Importantly, however, given that my family has long been involved with IDFNZ before tackling huge goals, my central focus will be to ensure I meaningfully contribute to the continuation of the Foundation’s successful operation like my Mother and Father before me. It is a matter of great personal pride that my family has played such an integral role in the development and ongoing operation of IDFNZ. I would particularly like to acknowledge the work of my Father, Nick Metson, who has now stepped down after serving multiple terms on the board. His unwavering support, encouragement, and advice were all integral for me to build the confidence required to pursue a board seat and hold the conviction that I have something meaningful to offer. While I still have plenty to learn, it is an honour to have now been selected to serve by the wider Foundation membership as he steps away. I look forward to picking up the mantle and supporting IDFNZ in any way I can over the coming years.