Hello Janet. It's quite the story of a brave young man, Whitney, his devoted (should be in capital letters) family, you, Ron and Ashley and dealing with an illness that no young person should have to go through.
I'm amazed at how the two of you alone are able to give Whitney the care he receives. It's admirable on the part of all of you. I can tell from reading it how heartbreaking things are for everyone. I've always been especially concerned about the very young ones who have this illness. Their lives are put on hold, just left in suspension, and I can't praise the four of you enough.
I also feel that Whitney should be given special thanks for having the attitude he does, agreeing to let studies be performed on him, Ron's co-workers who donate time constantly for helping to find an answer to this puzzle. I hope that it will be soon, especially for you and your family and for the very young among us. (And Whitney is what I would consider very young.)
Life is so difficult and I'm sure that Whitney's Buddhist beliefs help him deal with that side of things. How does he feel about how his spirituality helps him? I'm sure that thinking about a chair on that front porch also helps give him incentive, minus the squirrels, of course.
Ron reminds me of my husband. Mr. Inventor and a different way of thinking about most things. He's also highly involved in my illness(es). We can see ourselves in this book.
I'm almost finished with the book...probably another 20 pages, but I did want to let you know that I found Ron to be a remarkable man, especially given his childhood, and even in the midst of this, it's obvious that you're in love with each other and devoted to your children. A big hurrah to all of you!
May I say that the Open Medicine Foundation is wonderful and I encourage everyone to make a contribution, if possible. It can be doubled if you can find a relative or friend who works for a company that meets the donation. We do it via our daughter who has a different surname. Come on people....we have to do it, draw some money and definitely attention to our cause. Every $5 donation means something. My daughters will always remember so many of the organizations I've been involved in either as a founding volunteer or, in the case of Phoenix, as a member. Long after I'm gone, they and their children will remember to donate. I hope the book does exceptionally well....Yours, Lenora.