ABOUT THE VAGABOND FAMILY
Paul and I have been together forever, 20 happy years of work and play and now make the most of family life while adjusting to Isla’s condition. We are originally from Cornwall in England and fell in love with New Zealand in 2007 shortly gained our residency then planed our family.
Both our girls were born in Christchurch, New Zealand which was home at the time. Lola is our eldest, now 10 and Isla our youngest, now 7, who was unfortunately born with a rear chromosome condition called Prader Willi syndrome.
This caused many changes in our lives, along with the Earthquakes in Christchurch and lack of medication availability for Isla so we found ourselves bouncing back to Cornwall from time to time.
We now live back in New Zealand right up in “the winterless north”, which we’re very much enjoying. We’re part of a wonderful community and feel lucky to live in such an amazing place embracing all that’s on offer.
We have a small business we’ve enjoyed building up over the last 2 years and intend to leave it in the hands of good friends to run while we’re away, which will help us financially to achieve this project.
Isla has a rare complex chromosome condition is called Prader Willi Syndrome (PWS) which affects 1 in every 15-20,000 people making it very rare and unknown to most.
It causes stunted growth, low muscle tone, delayed mental and physical development, insatiable hunger due to no signals between her stomach and brain- therefore always hungry, causing a lot of stress and anxiety, especially around food, behaviour complications, along with many other imbalances.
We have to lock all food away out of sight and out of mind, although Isla will search, hide or steal food if able.
We eat three healthy meals a day, no bad snacks as her body can’t prosses fats or sugars as we can, we keep fit by biking, swimming and walking, dancing and outside games, but she exhausts herself easily due to her low muscle tone.
Isla has to have injections every night to help her grow and gain muscle tone, keeping her mobile and active is the key, which in turn keeps her strong enough to join in with the other kids’ activities.
Isla was receiving growth hormone in the UK since she was 2, then by 2016 she’s been receiving it here in New Zealand, enabling us to move back here from UK – again!
OUR PROJECT PLAN
We look back and remember how hard those early days were. If we could have 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 minimize 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:
- Touring New Zealand
- Living with PWS
- Traveling with kids
- Minimalistic bus life
- Lola’s healthy cooking blog
- Meeting amazing people along the way, join in and see what fun adventures we get up to on our tour.
- Filming and sharing all that we do as we travel, inviting the world to join us on our New Zealand adventure.
So many people can’t travel for whatever reason and would like to see more of NZ and all its beauty, from snow-capped mountains to sandy beaches and all the bits in between, we will be filming and sharing it all.
We have a vision -The Vagabond Family bus covered in stick people of all the families affected by PWS – visually symbolizing 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 on board with us. We’d like to have all the families from around the world affected onboard, but feel we’ll have a job fitting them all on the sides of our little bus. So we plan to start with the families affected within New Zealand first, transferring their family art onto vinyl, then onto the side of the bus and see how we do for space ! “we’re all in this together”.