Wow-what a fast-changing world we all live in right now - I hope your all doing OK. As a family, we chose to lock down a week before NZ officially did, as we were increasingly worried about catching the coronavirus. Lola was still at the local school, so we needed to self isolate. As it [...]
Well, the bus refit is still very much ongoing, and we're truly getting there now, with all the carpentry being a wonderful combined effort by my dear Dad ( boatbuilder/carpenter ) visiting who really wanted to be part of the project despite on holiday : ) and a great boatbuilder friend Ian and of course [...]
OK well, we've been plodding on with the bus fit-out, but feeling like we're treading water with everything else! Anyhow, we seem to have got a few more jobs done recently which makes us feel like we're getting nearer to setting off. Just a few days ago the first logo went on the bus so [...]
The bus is now starting to take shape as we remove parts of the bus that don't work for us with what does work for us. The main reason for changing the layout of the bus is to allow us to lock a separate kitchen to keep food well out of reach and out of [...]
Looking back to when we were settled, in UK, Cornwall, two little cherubs Lola and Isla - 3 and 6 at this point. So life had been very routine, doing the playgroup/ schooling thing, with endless appointments with specialists for Isla. Although the appointments were supposed to be supportive and positive for Islas's development, we [...]
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 [...]
Isla was born in Christchurch With Prader Willi Syndrome, and when she was two months old, we decided to move back to Cornwall, UK, to be nearer family and away from the ongoing Earthquakes which made us feel uneasy. We flew when Isla was still NG tube feeding, so I was still expressing which made [...]
Islas 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, [...]
