Grace's Battle With A Rare Disease

Grace is a 14 year old warrior who has been through a lot of medical illnesses for many years now that no kid should ever have to go through. It has been recently discovered that she has a primary immunodeficiency that has an unknown cause that they are thinking is a hereditary Chronic Granulomatous Disease, along with a retro-pharyngeal mass that the initial flow cytometry showed as B cell Lymphoma. Additional pathology testing of the specimens were inconclusive and they could not completely confirm or dismiss the diagnosis. They do know she has some type of lymphoproliferative disease that is usually not seen in kids, making it extremely rare. She was started on Infliximaub and methotrexate on a trial basis in hopes that it may help to reduce the size of the mass and lymph nodes. Unfortunately after 3 rounds of treatments....the treatments have not been effective and repeat scans show no improvement. It did, however, bring her sed-rate down from 71-24. She has not been able to eat by mouth for 6 weeks due to the extreme pain caused by the mass pressing on her eustation tube. She had a g-tube surgically placed in her abdomen 2 weeks ago to help maintain her nutrition. She's on daily Ketamine to help ease her pain. She has also been removed from school and placed on full-time Hospital Homebound. With no progress being made and no formal diagnosis it was decided that she needed to go to a more specialized facility and was referred up to Dana-Farber/Boston Children's for another opinion of this mass and what it is, and to also see if she is a candidate for a stem cell transplant or their clinical trial gene therapy consisting of a bone marrow transplant to help with the primary immunodeficiency. She also needs to go through chromosome testing to confirm the primary immunodeficiency that costs $20,000, and is not covered by insurance. The monthly expenses consisting of treatments, hospitalizations, appointments, travel to and from appointments that are hours away, surgeries, medications, home health, prescription formula, and feeding supplies are extremely high for a single parent to cover. Any donations made would be greatly appreciated and will go directly towards her care, medical expenses, and the ketamine that is not covered by insurance.