New Zealand's population is 4.433 million.
Giant Congenital Melanocytic Nevus affects 1 in 500,000.
According to those figures, there should be just a handful of people in our country living with this condition.
So what are the chances then, of meeting another person, with a CMN in the same location as Olive (a bathing trunk nevus), before she is 2 years old?
Personally, I think it's pretty damn awesome and incredible.
On Saturday, Olive and I got to meet a new friend. Her name is Haley, she is 19 and she has a nevus like Olive. And she only lives in Hamilton (For those who aren't familiar with NZ, that is only about a 2 hour drive from where we are in Auckland).
I think the meeting had much more significance for Haley and I, considering Olive is barely even aware that she HAS a back, let alone that the skin there is different to everyone else! She was content with rifling through Haley's wallet the entire time, and emptying what she could. She did try a few times to get me to pocket Haley's phone but I wasn't willing to be an accomplice.
This was also Haley's first time meeting another person with CMN, and I can only imagine how odd/cool/emotional that may have been for her. We discussed lots of different things, and both agreed that it is wise to hold off on the New Zealand Nevus charity. There isn't a lot of interest and momentum just yet in NZ for an association or foundation of its sort, so we figured we would wait a bit longer and see what happens. For now, we will piggyback on Nevus Support Australia, and Eddie and I still hope to attend the 2015 conference, though we are not sure yet how achievable that is.
Through our chats, I learnt a lot about her journey and what her parents had been through when she was a baby and young child. She has overcome some huge hurdles in her life, and is an amazing person. Full of positivity and has a real 'Get On With It' attitude. I hope for her to become a good friend, and would love for her to be around for Olive to see someone else who KNOWS what it's like to be a little different, but is beautiful and happy and enjoying life.
Unfortunately, we both totally forgot to get a photo of them together! We will have to do it next time. For now, I want to thank Nevus Outreach and Nevus Support Australia for connecting Haley and I so we were both able to meet. Eddie and I never imagined we would meet another person as special as our wee girl so quickly after her birth.
I think the most touching part came just before Haley left. Olive often lifts our shirts and tickles our tummy's saying 'tittle, tittle!'. She sat next to Haley, and lifted her shirt. Just as she went to tickle her, she noticed her skin and went 'oh!'. Haley lifted Olive's shirt as well and said, 'look - same, same'.
Olive looked at both, grinned and said, 'same, same!'
what a beautiful story Kizzie
ReplyDeletearohanui
nicky
Thank you Nicky x
Delete