I can’t remember our first meeting – I feel like I have known her all my life. And yet after attending her funeral I realise I probably knew just a slice. We met online – which is where she seemed to live her life in the last few years. Here she could reach out to people, chat to them, encourage them, laugh with them. She wasn’t afraid to tell her story – she was proud of her story but never boasted. At her funeral they said she stole 46years of life - it wasn't an easy steal. Her mother had been told she wouldn’t reach her second birthday – but she fought for all 46 of them. She missed out on many opportunities offered to the children born today with congenital heart conditions such as hers. It is easy to say she was born with a hole in her heart – and yet it was so much more than that. Shelly was born with Tetralogy of Fallot with Pulmonary Atresia.
“Tetralogy of Fallot has four key features. A ventricular septal defect (a hole between the ventricles) and many levels of obstruction from the right ventricle to the lungs (pulmonary stenosis) are the most important.”
Despite all this Shelly’s life was not about her physical heart. Today I learnt that she had a passion for music – especially the old stuff. I think everyone knew about her passion for the All Blacks. In fact, in lieu of flowers I wondered if we should make a donation to Heart Children, or the All Blacks!!! I know which one Shelly would choose! And Shelly was an avid Labour Party supporter with a direct link to Helen Clark via her personal email. Shelly made an impact on, it seems, everyone she met. And even Helen emailed of her sadness on hearing of Shelly’s passing.
Shelly and I began a support group for Adults with Congenital Heart conditions (out of date website now). We worked on a website, provided information, and made ourselves available for people to email. We had a small response. But in the end our dedication to this site dwindled. We had found our support group in each other. We met for coffee on and off in the early days, visited each other in hospital when able to do so, and emailed about our down patches and our recoveries. We had wider support networks – both with loving families and friends – but we offered each other something different. We just had to say – “Well…. Yeah… you know!” and we did.
Shelly – I’m going to miss our support group. You fought hard and you fought long. I will keep you close and remember. I hope I will be able to take on a little of your strength - the strength you showed the world – the strength you showed me – and ….. well….. you know! RIP or even better without the restrictions go enjoy a marathon or a game of rugby!