#weriseforphoenix

Sweet little Phoenix was diagnosed with a rare, genetic disease called Metachromatic Leukodystrophy. It is terminal and there is no known cure for this disease. There are only less than a handful of leukodystrophy centers in the United States. She did go to Duke to see if she was eligible for a stem cell transplant, and she was not due to how far along she is in the disease. We had already decided not to do it before we even left Duke just because chemotherapy she would’ve had to of done nine straight days of that which would have progressed the disease, which most likely she would have came out unresponsive. We have received so much support in our community with fundraisers, which has helped pay for some of her medical bills as well has adaptive shoes and pull ups, and co-pays to some doctors visits. She has AFOs on both legs and eventually as the disease progresses she will end up in a wheelchair. We will need to modify our home as well such as putting a full bathroom on our bottom floor. She goes to therapies multiple times each month such as physical therapy and occupational therapy. We will be giving updates throughout Phoenix’s journey. Your help will be greatly appreciated.