Team Claire

Claire Biangardi has become a Histio Warrior at only 3 years old. Claire was diagnosed with Hemophagocytic Lymphohistiocytosis (HLH) on July 18, 2013. After 10 days of fevers reaching 104 degrees, countless visits to the pediatrician, chest X-rays, and blood draws she was finally admitted to St. Louis Children's Hospital. Her symptoms indicated that her appendix may be the problem. The surgeons could not get a clear image based on the X-rays and MRIs. After surgery, the surgeons reported that her appendix was fine, however they found some lesions on her intestines. The head gastrointestinal attending had never seen any lesions like this in his entire 30 year practice. We now had a medical mystery and our precious 3 year old was progressively getting worse. She had swelling in her abdomen, and severely  labored breathing which resulted in her being moved to the Pediatric Intensive Care Unit. The doctors had run every blood test including tests for everything under the sun even rare tropical diseases. After four days a blood test result came back with something. It was finally determined that she had this truly horrible disease known as Hemophagocytic Lymphohistiocytosis (HLH). Please visit Claire's Facebook blog page to see the full story  https://m.facebook.com/teamclaire

'Hemophagocytic Lymphohistiocytosis (HLH) is a life-threatening immunodeficiency disorder. While rare, HLH is rapidly fatal. However, with prompt and accurate diagnosis and treatment, a cure is possible. Unfortunately, few physicians are knowledgeable about HLH, and it is often misdiagnosed or diagnosed too late. Without access to effective treatment, primarily bone marrow transplantation, most patients with HLH die.' +

Claire has responded well to treatment and her HLH is currently controlled with chemotherapy, immune suppressants and high dose steroids. The only true cure for HLH is a bone marrow transplant. The transplant would give her a new immune system. There are many risks with a transplant however, so we have sought out the experts in the disease at the Cincinnati Children's Hospital and Medical Center in Cincinnati, Ohio. We believe that this is the best place for Claire as Dr. Jordan and Dr. Filipovich are the leaders in HLH research in the United States. Dr. Jordan, Claire's primary doctor has allowed us the option of waiting on transplant. Claire is doing good at the moment and we are praying that she continues in this direction and we can avoid transplant altogether. However, if the disease comes back, we will do the transplant in Cincinatti. 

We want to help spread awareness and get the word out about HLH so that other children can be diagnosed sooner as early diagnosis and treatment is so important. These T-shirts are being sold to show support for Claire. Half of the money will support her travel expenses to Cincinnati each month. The other 50% of the money raised will be donated to the Matthew and Andrew Akin Foundation.  http://www.matthewandandrew.org/ Matthew and Andrew were two brothers that lost their fight against HLH. The boys parents, Justin and Kristin, have dedicated their lives to raising money and funding research to find a cure for HLH. The Matthew and Andrew Akin Foundation gives directly to Cincinnati Children's Hospital and spreads awareness for HLH through blood drives, bone marrow registration drives, and a 700 mile bike ride that raised 100,000 for HLH research last year! 

We have met many outstanding and amazing people on this journey including Kate Brockmeyer https://m.facebook.com/kate.photog or at her new website
http://www.katebrockmeyerphotgraphy.com Kate is a wonderful, giving, and an extremely talented photographer. She captured the image of Claire we have chosen to use on the shirts. Thank you Kate!

Thanks in advance to everyone who is considering buying a T-shirt!

+ Disease specific information above from Cincinnati Children's Hospital website http://www.cincinnatichildrens.org/service/h/hlh/default/