A Guide to Prader-Willi Syndrome

"Once I accepted that my daughter was different and will always be… Not better not worse… Just different! That’s when I felt the ground beneath my feet" Suhaila Bu Ghooma October 2024 Looking back on hospital appointments, continued therapies, and late nights searching the internet for information, I would say, it was totally worth it! I have always prayed for a "normal" healthy child but when I had Hamda, I prayed for guidance and strength to accept what God blessed me with. For a long time, I struggled to reach acceptance, but once I did, I was ready to think clearly, support her, and be the mother she needed. With the acceptance, I was no longer comparing her to other children, mainly to her siblings. At that moment, I made a conscious decision to take my life day by day. Only then, did I start to see my daughter taking her steps forward, reaching her milestones on her own time. Hamda was diagnosed with a rare genetic disorder called Prader-Willi Syndrome (PWS), at age of 3 years old. The syndrome impacts her physically, mentally, and emotionally. The main issues of the syndrome are the constant sensation of hunger and emotional imbalance, which requires understanding and support from everyone around her. Writing this book was an emotional and healing process at the same time. Hamda and I, recognize our difficult circumstances and the importance of finding a balance in everything we do, especially food management and security. This book is our way of sharing our experience, and offering support to others. We hope you will find it enlightening and useful!