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!