All money raised by the Miles for Miracles team will go to the Children's Fund of the Boston Children's Hospital Trust, which provides an unrestricted pool of funding to support patients and families. The funding helps BCH to undertake research to find cures, and it also goes toward services that improve quality of life for patients and families who often spend many weeks at the hospital, such as birthday celebrations, pet therapy visits, and subsidized housing for families.
We are very excited to announce that Grace is participating in the Patient Partner Program for the Miles for Miracles Team Boston. Grace has been partnered up with Amanda & Ryan Surgens. This is their first marathon! Be sure to be on the look out for the upcoming New Bedford Half Marathon!
Gracie's goal is to raise $2,000.
Grace is ten years old and was diagnosed with Crohn's Disease when she was seven. Crohn's Disease is an autoimmune disease in which there is chronic inflammation of the bowel characterized by inflammation of the GI tract. It can affect any part of the GI tract from the mouth to the anus, but it is more commonly found at the end of the small intestine (the ileum). It can also affect the eyes, skin and joints. In addition to these common symptoms children with Crohn's Disease often experience growth failure, malnutrition, pubertal delay, and bone demineralization. Grace has also experienced chronic Clostridium difficile infections and has under gone a fecal transplant. Dr. Bridget Hron, Dr. Michael Docktor, Dr. G. Russell, Dr. J. Huang, Dr. C. Weldon, Dr. C. Lachenauer, Dr. R. Grace, Dr. G. Licameli, Dr. G. Goodwin, Dr. E. Janssen, Nutritionist Karen Warman, Social Worker Janis Arnold and the countless number of compassionate nurses at BCH have helped Grace every step of the way, and we are extremely grateful. Grace currently takes a regimen of oral medications, receives infusions of Remicade (which belongs to a class of drugs known as biologics) every four weeks. Remicade can cause some serious side effects such as lowering your ability to fight infections. Unfortunately, Grace has had numerous infections (the Norovirus, Strep Thoat - 6 times in 6 months, Tonsillitis, Impetigo, Staph Infections, Conjunctivitis, Plantar Warts, and Pneumonia). She also, follows the SCD Diet (most of the time). When Grace is experiencing a flare we resort to EEN (Exclusive Enternal Nutrition). This is a therapeutic approach that involves the use of a complete liquid diet for a period of time through a Nasogastric Tube that is inserted through the nose, past the throat, and down into the stomach. Grace did EEN Therapy for 8 months last year. After a 2 1/2 year flare-up Grace reached remission this past September. YAY!!!!!
Thank you very much for visiting our page and taking the time to read Grace's story. Any donation no matter how big or small is greatly appreciated and we wish you a happy and healthy 2018!
Michael, Jennifer, Jack, Ryan, Christopher, Jillian & Grace xoxo