There are no ribbons for my son
April 11, 2017
Thank you so much to all who are part of this magical moment http://www.huffingtonpost.com/entry/58ed7c1ce4b081da6ad008f8 See more
This is the place you don't want to have to take your child. Because if you go here it means that something is wrong and no one can really figure it out. BUT, The Children’s Inn at NIH, is a magical world that allows the abnormality of blood draws, genetic mutations and puzzled doctors slip away for just a little while and gives the children a chance to be children. Desmond is a rare bird. In medicine, practitioners are told when you hear hoofs clomping, think horse not zebra. Desmond is a zebra. And because of his various potentially fatal medical conditions we get the privilege of working with the brightest minds in medicine, as well as staying at the Neverland that is the Childrens Inn. I am running for Desmond. I am running for Evan. I am running for the mothers and fathers and siblings whose lives are uprooted and whose children are stared at. I am running for the medical experts who dedicate their lives to helping our children. I am running to raise awareness and funding because my president elect is trying to take away the little my son and those like him have. If you can, please donate. This is the real deal. This place is beyond incredible and while we usually leave with more questions than answers, when we arrive, Desi always feels like he is home. The Children’s Inn at NIH provides free lodging—and so much more—to over 1,500 children that stay there each year while participating in clinical trials at the National Institutes of Health (NIH), the nation’s premier bio-medical research institute. Since The Inn’s founding, researchers have made huge advances in treating diseases like HIV, childhood cancer and asthma- and families benefit from over 1,000 support programs offered each year while their children participate in groundbreaking research. Each mile and each dollar raised from Team #RunINN4Kids fuels access to the research that makes childhood possible for the more than 13,000 kids, traveling from all 50 states and 94 different countries, who have stayed at The Inn. The Inn provides not only free lodging, but also meals, more than 1,300 hours of educational, recreational and therapeutic programming each year—things like homework help, field trips to the monuments in DC and even summer camp for children that could never otherwise attend—all while enabling families to develop friendships and learn from others who know what it’s like to seek the promise of hope or a cure for a seriously ill child. The money raised by #RunINN4Kids makes childhood possible for the children who stay at The Inn and for children worldwide that benefit from the research happening at NIH. See below for Hannah’s story to learn more about how team #RunINN4kids supports kids like her each and every day.