Rare disease Wegener's please read

Eight years ago after, after visiting many different doctors for about a year, we have been trying to figure out what was wrong with me.  One  doctor did a test to confirm and the diagnosis was that I had Granulomatosis with Polyangiitis (Wegener’s arteritis or Wegener’s disease).  An autoimmune disease that there is an estimate of 3 in 100,000 cases.  I was started on a drug infusion regime, that was only approved by the FDA six months earlier, at the cost of $26,000 an infusion. I had the infusions in four week intervals initially and then every six months, with the last two treatments in December 2017. The billing  was $62,000 each, but I have become immune to the treatments. In January 2018, I came down with  collapsed right lung. The doctors went inside with balloon to expand my lung 3 times, then I had a heart attack, with three stents inserted, and then suffered two blood clots. I am getting much better but the loss of income, and having to pay the IRS $42,000 in fines and interest 4 years ago and have gone through saving and cash slowly cashed, in my wife’s 401K, which is all gone.  We are currently trying to survive, I have never taken anything from anyone, no unemployment, or other assistance, I have always  paid my way. Currently I go in for a infusion, once a month. We (Wife and 2 kids)  are currently overwhelmed by this  situation.  We appeal for your generosity to assist us.