What do you see when you picture an 8 month old baby? At 8 months, our son Ty loved to dance and listen to music. He was fascinated by wheels, he would stare down at the wheels on a stroller instead of enjoying the scenery during walks. Ty gave the BEST hugs. Ty also had a mass growing on his lung. The mass grew to be so big that he couldn’t breathe on his own and it blocked a major artery. For 2 weeks Ty needed to be kept sedated and on a breathing machine. For a month, we lived at Children’s hospital while Doctors tried to diagnose Ty. He went through multiple surgeries and procedures including a blood transfusion, heart surgery, chest surgery, and biopsies of his bone marrow, spine, and of the mass itself. On November 29, 2013, the day after his first Thanksgiving, Ty was finally diagnosed with mediastinal Juvenile Xanthogranuloma (JXG). He began chemotherapy. After 12 weeks of weekly chemotherapy and steroids, the mass shrank to almost nothing. Ty continued chemo for another year and celebrated his last chemo on November 19, 2014, so far the JXG remains stable.
These days, Ty still loves to dance. He also loves playing Minecraft, building with LEGOS, and riding his bike. Ty was lucky, but we cannot imagine how many have not been so fortunate. The number is unknown. It is because of how rare Histiocytosis is and the way the disease presented itself in Ty that the diagnosis arrived almost too late. Now, when we meet an 8 month old, we inevitably remember where we were with our 8 month old. We are raising funds and awareness for Histiocytic diseases so that one day a cure will be found and no other child or family will have to suffer or lose their battle to these rare diseases.
Please note: the fundraising thermometers track both donations and registration fees. Registration fees are used to cover a portion of the costs of running Histio Hike Shenandoah. The remaining costs are donated by the event hosts. One-hundred percent of donations go to the Histiocytosis Association in support of its mission and programs.