Shaira was born in 2011. She was the older twin and we didn’t know anything was wrong during pregnancy. It was a huge shock to find she was in intensive care straight from birth and they didn’t know what was wrong. Tests eventually after 56 days confirmed she had Prader Willi Syndrome. When we brought her home she was fed through a feeding tube as it was discovered she had an unsafe swallow. Eventually, through patience and syringing small quantities of milk we managed to get her to take a bottle. Many professionals worked with her SALT, Portage Play, physio but she still didn’t take independent steps until she was 5 years old. She still cannot walk very far without needing the wheelchair and at 7 years old we still have no words. It is very very hard having a non-verbal child and also a daily reminder in her twin sister where she should be in her development. Shaira has been under many teams gastro, respiratory, eyes, hips, endo and spinal so hospital clinics have become the normal for us. She never complains and also has a daily growth hormone injection since the age of 14 months. She still uses nappies day and night and she shows little interest in potty training. Shaira's older brother is also disabled with ASD and I suffered a heart attack last year - a huge shock. Nobody knows the strain and stress disabled children bring to a family and the adaption and sacrifices that are made. Despite that Shaira is a much loved member of the family. It’s so hard that because of the PWS she has to miss out on so many treats as her diet has to be kept so healthy and she is supervised around food or food waste. We haven’t as yet had to secure food under lock and key but are ready for when we need to.