When my youngest daughter arrived prematurely and very ill and spent the next few years in and out of hospitals, I, along with several GPs, struggled to understand just exactly what was wrong with her. When she was almost eight years old a chance referral to a heart specialist by a Locum and a subsequent referral to a paediatric specialist resulted in her being diagnosed as having an immune deficiency. I had absolutely no idea what an immune deficiency was and was searching for some sort of support. Fortunately our paediatrician gave me a contact with Kids Foundation. The help, support and information I received was a lifesaver and I was hugely grateful to find that we weren't alone in this struggle. I was impressed by the fact that these people who were all in the same situation as myself could still find the time, and had such strong commitment to the wider community that they put aside their own problems to help others.
I was invited to join the Board of Kids Foundation in the late 1990s by the then Deputy Chair, Nick Metson, a fellow Wellingtonian. Since that time my perspective has undergone several shifts, firstly from my personal perspective as a mother dealing on a daily basis with this chronic illness that affected the life of my child and our whole family. Kids Foundation broadened my outlook as I began to understand that there were other families all around New Zealand dealing with these same and even more serious immune deficiency issues and that by joining together in a support network we would all be much better able to cope.
Fortunately the Board was able to fund many families from all around New Zealand to attend patient meetings held in 2005 and 2007 thus enabling them to hear, first hand, from both local and International experts in the field. I found it hugely valuable to be able to understand the needs of these families and listen to their experiences.
My next shift in perspective came when I was fortunate enough to be able to represent the Board at the IPOPI conference in Versailles in 2004. The opportunity to hear some of the world's most brilliant medical and scientific minds was mind blowing. This plus meeting families from around the globe led me to realise that we were truly an international 'family' in this struggle with immune deficiency and how much we still have to learn!
Since then I have also had the privilege of becoming involved with the creation of The Immune Deficiency Foundation of Australia IDFA as a director and member- a huge learning experience.
This has been a wonderful journey for me. I am eternally grateful for the support that IDFNZ has given to my family and for sharing the laughter and the tears along the way. I have been privileged to work with some of the most outstanding people I know. These are people so professional, so committed to the vision, and so steadfast in their stewardship of the organisation. I look forward to spending many more years in their company!