I love Johnny's song and agree ,it needs to be heard everywhere,not just for Johnny ,but because it's so good !
There is a foundation called Songs of Love .They compose personal songs for chronically and terminally ill children. They did one for my "Johnny" ,Sam,when he was 6 years old. It is fantastic! Fabgod ,if you have time............
http://www.songsoflove.org/
On a side note ,one reason my "Johnny" is developmentally disabled is because he acquired
FUNGAL MENINGITIS when he was 4 months old. He was still in the NICU ,had a central line for IV nutrition ( he had 76% of small bowl removed and didn't absorb formula) and was constantly given the toughest IV antibiotics possible .
I always believed the fungus grew because of the antibiotics,but now I'm wondering if it was introduced ,given the new outbreaks linked to a steroid injection.
We became involved with him just as he was recovering from it. They lied to us about how many problems he would face and I'm so glad they did!!!
It did a lot of damage. He ended up back on a vent and had to have a tracheostomy for a while . His current airway is the size of a one year old,but he's almost 11.
My point is........this type of brain damage can happen to anybody . Even when children are born healthy ,accidents ,illness and trauma can change that in a heartbeat .
I think we all have a reason to be concerned about how Johnny's case has developed ,because one day Johnny could be your child or grandchild.