Fight for #warriorluke

My beautiful nephew and godson, Luke Whitbeck, was recently diagnosed with Gaucher’s Disease (pronounced "go-shay"). Gaucher’s Disease is a rare hereditary condition that usually presents itself within the first year of life. Symptoms include enlarged liver and spleen, chronic anemia, fatigue, easy bruising, bone issues and the associated pain, and if gone untreated, the condition can be severely compromising and even fatal. For more on Gaucher’s: The National Gaucher Foundation One week after Luke’s diagnosis in February, he began what is and will be weekly treatment for the disease for the rest of his life. The treatment is an enzyme replacement therapy and is much like chemotherapy in the way it is administered—a port was surgically placed in his chest—and involves one day spent at the pediatric infusion center by the children's hospital for his infusion each week.   Reactions such as fever, hives, nausea, vomiting, itching, fatigue and headaches are among the common side effects experienced with enzyme replacement therapy. Luke has experienced most of them.  Parker has recently accompanied Luke to a few infusions. He loves being there with Luke!  So far, Luke has been a real trooper. He’s taken in stride all the poking and prodding. Luke has made friends with the other children (and even one special "big guy" with Gaucher's!) receiving treatments at the infusion center, and knows all of the nurses by name!   We have so many things to be thankful for! First, Luke’s Gaucher’s is Type 1, which means THERE IS TREATMENT! And, with treatment and the proper care around it, he will live a long and happy life.  However, the medication he needs is a rare “Orphan Drug”. An Orphan Drug is a pharmaceutical that remains commercially undeveloped owing to limited potential for profitability. There are less than 60K people alive on the earth today with this condition, so it is not profitable for companies to develop the therapy. And, because of this status, the medication and associated costs are very expensive. My sister Meg, and brother-in-law, Drew, are facing about $30,000 per year in medical expenses AFTER INSURANCE. They have applied for a financial assistance program from Genzyme Corporation, the maker of the drug that is used to treat Luke, and Drew's job (with the family business) has found a great health insurance plan. But, they still are facing a long future with heavy out-of-pocket medical expenses. They need our help. We’ve decided to begin this campaign on Luke's second birthday! We are calling it "The Warrior Campaign" after Luke was donned the hashtag #warriorluke on social media. The name Warrior Luke has stuck! Please consider donating to this campaign. Please do it today. Your generosity will propel Drew, Meg, Parker and Luke forward with hope and peace.   Thank you so much for your prayers, love, and support. Use the hashtag #warriorluke when you share The Warrior Campaign!