BENEFITING: PRADER WILLI SYNDROME FAMILIES UNITED INC
EVENT: 2017 Walk and Roll for PWS
EVENT DATE: May 20, 2017
Brooke Burns wrote -
7th ANNUAL WALK AND ROLL FOR PWS
Can't believe it's time again to start preparing for our annual walk to move the pendulum and change lives for those with PWS. We live with PWS everyday so it's often something we assume people know about and understand. We want to tell everyone about an event we've been doing every year in order to raise money for Prader Willi Families United. Our daughter Brooke was diagnosed with PWS within hours of her birth, at which time she was taken from us and placed in intensive care. PWS occurs randomly. It's known as a spectrum disorder, as the symptoms as well as the severity can vary to some degree, however low muscle tone and an insatiable appetite are hallmarks of the syndrome. Brooke was unable to feed adequately during the first year due to her low muscle tone; however that has now changed to where she's always hungry, even after finishing a meal. She also has anxiety, OCD, as well as learning disabilities. Much of her anxiety revolves around her schedule and meals and is every day 7 days a week.The questions are non-stop, and we literally need more energy to get through a weekend than a hectic day at work. Respite is difficult. Despite the hardships, we couldn't imagine our lives without Brooke, as she is such a loving, caring, empathetic person with a unique sense of humor. There are challenging days, but we know that's when we have to exemplify strength, resilience, and a positive affect for our children. We'd appreciate any donations as well as anyone who wants to walk with us. Thanks in advance for your understanding and support.....