On April 16th, runners will take on the Boston Marathon in support of Boston Children's Hospital Miles for Miracles Team. The Miles for Miracles Team members will join 30,000 of the world's best runners over 26.2 miles and will be cheered on by patients and families who have benefited from Boston Children's Hospital's world-class care. All money raised by the Miles for Miracles team will go to the Every Child Fund of the Boston Children's Hospital Trust, which provides an unrestricted pool of funding to support patients and families. This funding helps BCH to partake in more research to find cures. 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 once again, participating in the Patient Partner Program for the Miles for Miracles Team Boston. She has been partnered up with the amazing Amanda and Ryan Surgens!
Gracie's goal is to raise $5,000!
Gracie is eleven years old and was diagnosed with severe 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 often experience growth failure, malnutrition, pubertal delay, and bone demineralization. Grace also suffers from chronic Clostridium Difficile infections and has undergone two fecal transplants. Grace currently; takes a regimen of oral medications and receives monthly infusions of Remicade. Unfortunately, Remicade can cause some serious side effects such as lowering your ability to fight off any type of infection. Grace has had her share of infections (Norovirus, Strep Throat, Tonsillitis, Impetigo, Staph Infections, Conjunctivitis, and Pneumonia) over the past couple of years. When experiencing a CD "flare" we resort to EEN (Exclusive Enteral 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. About two years ago, Grace had an NG tube for eight months and was unable to eat. She is closely followed by GI, Infectious Diseases, Dermatology, Oncology, Rheumatology and Ophthalmology.
How fortunate are we to live an hour (without traffic) from the greatest Children's Hospital in the world! Some of the most amazing doctors, nurses, and support staff have been such a large part of Grace's support team. Thanks to all of them, we have an amazingly smart, caring, gregarious and beautiful daughter who brings joy to our family as she enjoys life.
We've joined the Miles for Miracles Team because we believe very strongly in all of the amazing things BCH does for kids and young adults!
Please help us support BCH and make a gift today! Any and all donations are greatly appreciated, no matter how big or small!
Lots of Love,
Michael, Jennifer, Jackson, Ryan, Christopher, Jillian & Gracie xoxo