Angelica's Amazing 3rd Birthday Fundraiser
Hello family and friends,
On October 17th, our warrior and precious daughter, Angelica, will be celebrating her 3rd birthday! Gennelle and I are extremely overjoyed as we approach this milestone. Angelica has accomplished so much, despite the challenges she was born facing. Only God knows where her ceiling is, and it is our greatest blessing and most cherished responsibility (with all of your love and support) to assist her in reaching it. In celebration of this milestone, I am launching a fundraiser for her birthday in support of Prader-Willi Syndrome Association USA- a non-profit organization that has been a source of support, expertise and hope from day one.
Some of you may already know our story, but we are also eager to utilize this milestone to raise more awareness about PWS (a cause is near and dear to my heart). Angelica was diagnosed with Prader-Willi Syndrome (PWS) at 20 weeks of gestation (officially at birth). PWS is a rare, variable, and complex genetic neurobehavioral disorder a resulting from abnormality on the 15th chromosome effecting 1 in 15,000 to 25,000 births. PWS is felt to be a multistage disorder with decreased fetal movement prenatally and low birth weight. Infants have “failure to thrive” due to feeding problems and hypotonia (low muscle tone) at birth. The symptoms of PWS cause physical and intellectual delays, problem behaviors, difficulty with hypothalamic dysfunction (a part of the brain), challenges regulating body temperature, hunger, thirst, high pain threshold, sleep-wake balance, emotions, fertility, gastrointestinal and respiratory issues and more.
The hallmark symptom of PWS is hyperphagia which is insatiable hunger (an inability to feel full) coupled with a metabolism that utilizes drastically fewer calories than normal, and (in the absence of a sound nutritional plan) can lead to life-threatening obesity. To date, most individuals with PWS are unable to live independently, a source of motivation as we collaborate with Angelica each day to help her overcome obstacles and exceed all of our expectations.
Prior to Angelica’s diagnosis, we had never heard of Prader-Willi Syndrome. It was clear after hearing our doctor’s explanation that our lives would never be the same.
Fortunately, we were able to connect with PWSA | USA shortly after Angelica’s birth. Our first contact with PWSA | USA provided us the encouragement to understand Angelica will be fine and we are not along on this journey. PWSA | USA provided us with their “Package of Hope”. This packet of document included several publications which helped answer many of your questions we had and offered guidance on critical issues including nutrition, medical concerns and the use of Growth Hormone. We were connected with a “veteran” parent who shared in some of our experiences and helped us understand the first-hand concerns Angelica could possibly encounter and navigate the numerous 1st year appointment and therapies. We were also connected with Facebook support groups of numerous supportive, encouraging and empathetic families. Connecting with PWSA |USA and the PWS community ensured our family was set on a solid path of knowledge, growth and support to care for and advocate effectively for Angelica. All the love and support exceeded our expectations and for that we are grateful. Without the resources, expertise, and support of PWSA | USA, there would be no advocacy efforts in place to advance the needs and best interests of our daughter, no tools to educate and support families, and no hope to help us on our journey. Funding is required to maintain these critical efforts. With your support of this fundraiser, you can help to ensure PWSA | USA can continue to provide our family and thousands of others across the U.S. the life-saving support/education and hope that every PWS family needs! No amount is too small.
On behalf of my family, THANK YOU for taking the time to learn more about PWS and for considering a donation to support PWSA | USA in honor of Angelica’s 3rd Birthday! While there’s no cure and very few treatments to alleviate the symptoms of PWS, we are committed to fighting at Angelica’s side to help her live a full and independent life!
Anything for my Angel!!!!!!!
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