James' fight with Alagille Syndrome

While pregnant my son went into cardiac arrest and I had to have an emergency C-section, he then was jaundice and diagnosed with conjugated hyperbilirubinemia and placed under the blue lights for 12 hours. His jaundice stayed and the next months we went through numerous tests, some worse than others. At 4 months he was diagnosed with a one in a million strand of a rare condition called Alagille Syndrome. With this condition James has butterfly vertebra, pulmonary artery stenosis, bilateral pulmonary branch hypoplasia, retracted ear drum, posterior embryotoxic, enlarged liver, difficulty absorbing vitamins and minerals, and difficulty filtering toxins. He can not have simple procedures with out being put under due to possible heart attack. Recently his liver levels have worsened however we are being told until his liver is actually failing the only thing they can do is to monitor. He fell recently and hit his head causing his ears to bleed and there is still blood behind one of his tubes. He will going into surgery in November to ensure there is no bleeding, he has a severely retracted ear drum that he has trouble hearing and that will be worked on as well while he is under, he may need his ear drum reconstructed and will most likely need a hearing aid. Due to the responses I have received from some of his specialists I am looking else where, however will have to pay out of pocket and in advance. I have taken off a lot of work recently due to his condition and I am a single mother on a single income. I am unable to pay for any of this at the moment. We also have found a specialty clinic that is known to specialize in Alagille Syndrome, however it is in Philadelphia. My son's appointments are beginning again on the 30th of this month and will have some every other week in September and October and then the sugery in November.