The family of Archie Battersbee are calling for an inquiry after his death on Saturday following a fraught legal battle to keep him on life support.
The family fought against turning off his life support in successive courts and even turned to the European Court of Human Rights and the UN, but were ultimately defeated.
Their last request to have him moved to a hospice so that he could die in more peaceful surroundings was also turned down.
His family, who were supported by the Christian Legal Centre, said they were "so proud" of Archie and that he had "fought against all the odds".
In a statement, they also thanked their supporters and those who have stood with them in the last few months.
However, they were strongly critical of the current system and are calling for change.
"We want something good to come out of this tragedy and the horrendous experience we have been put through by the system," they said.
"No parent or family must go through this again. We have been forced to fight a relentless legal battle by the Hospital Trust while faced with an unimaginable tragedy.
"We were backed into a corner by the system, stripped of all our rights, and have had to fight for Archie's real 'best interests' and right to live with everything stacked against us.
"This has now happened too often to parents who do not want their critically ill children to have life-support removed.
"The pressure of the process has been unbelievable.
"There must be an investigation and inquiry through the proper channels on what has happened to Archie, and we will be calling for change."
