Our youngest daughter Isla, now 7, was born in New Zealand with a very rare condition called Prader Willi syndrome which affects 1 person in approximately every 20,000. This has been life changing for us all, but we continue to make the most of life and do the best for our family.
One of the main side effects of this condition is that Isla’s always starving hungry causing her distress and endless anxiety, especially around food. It also causes delayed physical and mental development, low muscle tone, inability to have children of her own or also maybe never lead an independent life along with endless imbalances in her little body.
We feel after many years of trying to understand Isla’s condition, with ups and downs of coming to terms with it, adjusting our lives to suit, we now feel ready to share what we’ve learned with others who are where we once were in her early life.