It is Rare Disease Day! Siena Eve was diagnosed with Prader-Willi Syndrome March 10, 2011. PWS is one of an estimated 7000 rare diseases. A person with Prader-Willi Syndrome lives with a constant feeling of hunger, their brain believes it is starving and their metabolism uses drastically fewer calories than normal (approximately 60% less calories of a typical peer). This can lead to excessive eating, diabetes and life-threatening obesity. In addition, PWS can cause low muscle tone, short stature if not treated with growth hormone, scoliosis, speech apraxia, obsessive-compulsive disorder, difficulty controlling emotions, cognitive delays, skin picking, mental illness and incomplete sexual development. While there are medications and surgeries to help control many of these symptoms, there is no known cure for the hunger and our children are left feeling as if they are starving, even when their bellies are full.
Do you know someone living with a rare disease? Do you know a family advocating for their loved one’s rare disease OR ANY diagnosis? Take a moment today to let them know you support their efforts… it does take a village to help raise a child, but all it takes is one person’s HOPE to change the course of that child’s future. Siena is very lucky to have a wonderful team behind her every step of the way! Check out her sister, Isla, who dressed like Rare Disease Diva for super hero day at her school yesterday!! Much love and thanks for sharing our journey. xoxo