Rebelle A Medical Puzzle

Our youngest child, 9 month old Rebelle, was born with an uncommon condition called hemihyperplasia, where one side of her body is larger than the other. She also has a severe localized swollen lymphedema which is a buildup of lymph fluid. Rebelle was recently diagnosed with a rare condition called lymphangiectasis which doesn't allow the absorption of nutrients. Rebelle is losing red blood cells and proteins and for some unknown reason she is also losing white blood cells. Rebelle is required to be on a PICC line which delivers nutrients directly to her blood stream. She's lost 1 lb. in 3 wks., can't keep food down, and has continued to lose weight. Rebelle is in a medical category called “failure to thrive”. Tests are continually being ran with more still to come.
We are seeking help. There is no available treatment for Rebelle in Fairbanks Alaska so it requires our family being separated, with me living in Seattle to be with Rebelle, while the rest of the family, including our 4 other children, remain at home in Fairbanks. With numerous tests to be ran, many unknows, and no treatment plan yet, there is no discharge date in sight. While no one ever wants to ask for help, that’s in fact what we are asking. So as not to leave my daughter’s side, we need help to pay for renting a room, transportation, meals, medical bills, medication, and to pay for child care and run our household in Fairbanks while John continues to work.