For all of you that have helped by donations of time and money, spreading the word and praying I wanted to let you know some good things that are happening.
These are words from Laura:
We have GOOD news to share with you! Lane is going to start taking the medicine we have been waiting to get for so long- this drug is what can chelate the iron out of the brain, which is causing his neurological problems. We discovered that the medicine, deferiprone, is covered by our insurance now. Lane will not have to be in the trial in CA and we do not have to worry about placebo getting in
his way of gaining a normal life! Sometimes insurance companies will deny coverage of a drug down the road and because of that, we are going to keep the other two boys in the trial. The drug out of pocket would cost us $25,000/yr, for one kid if insurance would deny us, so that is why we are not going to risk putting all 3 boys on it. Tanner and Ty have time and we can wait a bit with them for the trial to start, which they say will begin this fall. The prescreening for the trial should begin in September. Prescreening is the release of medical records and then they accept patients into the trial. Then they will begin sending people to CA to start. We are so excited about this news and excited to see what it will do for Lane! Part of our prayers have been answered and we are just going to keep praying that the drug will do what it is supposed to do! The words that I live by now are HOPE, BELIEVE, and most important FAITH! Once again we want to thank you all for your continued support and prayers!
No comments:
Post a Comment