Aedan’s story began over 16 years ago, and when he was born, we had no idea where he would be today. His early years were filled with countless doctor’s appointments and visits to nearly every pediatric specialty you can think of. We were continuously told of all the things he could never, and would never do. We refused to accept that future and instead sought out experts in the field. We’ve been incredibly fortunate to find Aedan the best care and, through that care, the most promising treatments. However, this journey has not been easy. Aedan works tirelessly every day to overcome continued obstacles, and many others living with Prader-Willi Syndrome are doing the same, often without the benefit of clinical trials or treatments that have helped Aedan get to where he is today.
Please join us in supporting this rare disease and the individuals living with it. PWS impacts every facet of life for individuals living with this rare disease. There is no respite, no reprieve. People living with PWS are in an unending daily battle with their own bodies and minds. Constant hyperphagia, the feeling of hunger even after a full meal, global anxiety that leads to difficult behaviors, and ongoing medical issues caused by comorbid conditions, are the harsh realities they face every day. As it stands today, the vast majority of people with PWS can not live independently. The nature of this disease requires constant monitoring and support. PWS not only permeates every waking moment of the day, but every day in the life of the individual and family members of those living with PWS.
Research shows that caregivers also experience significant stress and emotional strain due to the high demands of care related to Prader-Willi syndrome. This highlights the need for dedicated medical care that addresses the physical, mental, and behavioral challenges of PWS. However, there is real hope on the horizon. Ongoing clinical trials and a new treatment nearing approval in the U.S. bring promise for the future. But families still need our help—right now. Please consider making a donation to help support PWS Families United. Our organization provides education, support, respite and funding for research. Our dream is to see a day when babies born with PWS are told that while their road will not be an easy one, it will be a road that leads to a full and independent life.
