We look back and remember how hard those early days were. If we could had seen a family doing what we’re about to do it would have given us hope during those early times with our future seeming so unknown and uncertain. So, for those of you who are new to PWS, there is light at the end of the tunnel.
We’re going to minimise our lives and move into our bus, travel around New Zealand gaining awareness and create a video blog recording all that we do and see as we travel. We’ll cover topics like:
- Us in a bus
- Traveling with kids,
- Bus life
- Living with PWS
- Meeting amazing colourful people along the way, join in and see what fun adventures we get up to on our bus tour.
- Filming and sharing all that we do as we travel, inviting the world to join us on our adventures around New Zealand.
So many people can’t travel for whatever reason and would like to see more of NZ and all its beauty, from snow caped mountains to sandy beaches and all the bits in between, we will be filming and sharing it all.
Each PWS association, of each county, will forward our idea to all those families registered with them, then if they wish would draw a small stickman picture representing their family, then mail it to us. We will then add them onto vinyl transfers sticking them onto the side of the bus. The bus will be covered in stickmen – visually symbolising how many are affected by this rare condition creating awareness on our video and as we travel from place to place, literally bringing them all onboard with us “we’re all in this together”.
As we visit many different places it is our intention to invite families with PWS, living in that area to meet us if they feel they would like to during this time. Our video will be interactive where the viewers can vote a place for us to visit – be it a city or beach, a waterfall, a museum, a famous landmark, a lake or a mountain.
We feel other families affected with PWS will see us dealing with many similar situations but with a more positive slant, i.e. being out there trying to lead a normal active life with our children. There are blogs out there, but we feel not many with the same positive goal in mind. We have been in touch with several PWS associations, still many more to contact, and they are all very keen and feel it would be an amazing thing to do for the families out there new to PWS.
We feel we would like to give back somewhere on this journey of life and feel it is a good time for us to do so now, as our eldest Lola may not want to be so transient in her teenage years, whereas now she is very much part of this plan and our decision making. Therefore we plan to be in the bus before Christmas to enable us to visit the far South of NZ during this coming Summer time although we will have a little log burner onboard we would like to be back up here in the Bay of Islands as winter draws in again!
So we are in the middle of building our website, designing a logo, learning how to use all this really technical gear we’ve bought – cameras, GoPro, drone and modifying the bus, along with getting the business ready to leave and house ready to rent, so it’s all going on and now getting very busy!
We’re actually quite private people and feel like we’re giving up a lot regarding losing our privacy, so for this project it’s all going out the window, but in the end it will all be worth it, we’re going to really be out there for a change.