Saturday, 18 April 2015
This picture is a great depiction of my motivation to start Nevus New Zealand. Don't get me wrong, we have had plenty of support from friends and family, and from other nevus parents via the internet. But when Olive was born, we DID feel very alone. Those early days were scary and lonely, and we felt we had to be the pillar for others to encourage strength and understanding with our little girl. The doctors didn't know much, if anything, and we had to research her condition ourselves and educate our doctors.
A lot of nevus parents feel this way. That those first few days in hospital are frightening and unknown. That they were and are their child's strongest advocate, and that they had to learn how to deal with this change in their life on their own, without a lot of support from medical professionals. My dream for Nevus New Zealand is to not only support the families we are already connected with (and they support and encourage US just as much!), but to provide more awareness so that one day in the near future when the next wee baby is born just like Olive, the doctors aren't as stumped. That they can tell them what the condition is, and to be able to put them in touch with us - a group of people whose lives have also been changed by CMN.
Recently we had our second Nevus NZ family get-together, and with the great turn out, it was evident that we are getting somewhere. We had 34 people attend, 10 of which had CMN. New Zealand has a population of 4.471million people, and if Giant CMN affects 1 in 500,000 we already have one extra person! Not to mention the others who couldn't make it. There are bound to be more people in New Zealand we haven't connected with, and this is so exciting. I love hearing from new families who get in touch, and I could talk for hours with people about all the different aspects of the condition and being a parent of a child with CMN.
Our logo for Nevus NZ is underway, as is the website. I am hoping to meet in June to discuss the set-up of our charity status and hopefully get that underway - once we are registered it will be easier to apply for funding and get our name out there to promote awareness.
Please, if anyone can help, we still need to raise a bit of money. This will be ongoing, but for now the goal is to raise enough to pay for the legal advice, and hopefully a pamphlet run. If you support charities, please consider choosing us. Every little bit is a huge help. We cant do this on our own! If you would like to support us and donate, you can do so here.
Thank you all for your ongoing support. This means the world to me and my nevus family.