Aliyah Fett my niece (Sweet Pea)

Aliyah is a 13 year old that has autonomic dysfunction. Her POTS is affecting her ability to function like a normal teenager. Her symptoms are getting far worse before they get better. Statistically approximately 80% of people will overcome this illness in their early 20s. We hope that is the case for Aliyah. In the meantime, her family is desperately trying to find ways to get her healthy and mostly pain-free so she can enjoy being a teenager again. Aliyah’s days mostly consist of laying around unable to do much of anything because of her pain and dizziness. This includes school. Even though she is doing online half of the day and “normal” school the other half, she can rarely make it to normal school and can barely focus on her online school. So far Aliyah and her family have made two separate trips to Mayo Clinic and one more 4 day trip coming up in April. She has had a table test, sleep study, psychology visits, physical therapy, various lab tests, ECG, EKG, etc . Coming up this month she will be getting IV infusion therapy for iron. Next month they will be heading back down to Mayo for pulmonary testing, voice evaluation, gastric emptying studies, and more consults.

Although they have medical insurance, the medical costs are piling up. Not to mention the time off of work they have to take and costs for lodging, gas, and food when they are away from home.
Aliyah will probably more than likely be doing a 3 week pain rehabilitation program at Mayo this summer, which means one of her parent's will have to take that time off of work to accompany her. Which will be 3 weeks of lodging and food away from home as Mayo is about 3 hours from their location. They're not sure on that yet, but that's what one of her doctor as recommended. Aliyah does not want to go, but the rehabilitation statics of this program are phenomenal.  
Any help would be appreciated.