Having lost two children of our own, and almost a third, I can relate to some of the fears and emotions you're experiencing. There is no decription for the gut wrenching reality of the doctors reports that suck the spirit from the depths of your heart. The emotional roller coaster of good news and setbacks is mind numbing. To see our beloved children suffering these horrific deseases can transform even the strongest of us into a sobbing, emotionally drained empty shell.
I read Tyler's story on the link you provided, well as much as I could bear to as my own memories started to overwhelm me.
Our thoughts and prayers will be with you every day. May Tyler live a long and healthy life filled with the love and family he's grown so accustomed to over the past six years. May your family find the strength to deal with what ever the future holds in store. May our Gods and our doctors finally free our precious children from these terrible diseases.
You are not alone my friend, we're all praying for Tyler.
God Bless.