Oakley Orange, from Strood, was given just a 65% chance of survival after suffering a severe allergic reaction to medication.
Oakley Orange with mum Lorraine
The seven-year-old schoolboy has a life-threatening skin condition called Stevens Johnson Syndrome (SJS), where the top layer of skin becomes detached from the lower layers.
The condition has affected Oakley’s internal organs, leaving him unable to breathe on his own, and battling hypothermia and a lung infection.
Oakley has been unable to speak, move or even open his eyes. But each day he is slowly getting stronger. He is now off the ventilator and can say a few words.
Mrs Orange, who has been at his bedside since he was admitted to hospital on December 5, said: “His voice is the smallest, tiniest whisper. His first words were hello mum. He has said I love you mummy and I love you daddy and asked for ice cream.
“It is the littlest things, those things you take for granted, they are the most amazing things – a little squeeze of your hand or a little smile. It just puts your whole life into perspective.”
Oakley Orange, left fighting for his life after a reaction to medication
Oakley has lost 100% of his skin, as well as his fingernails, toenails and hair.
On Tuesday he underwent an operation to stimulate new skin growth. The treatment, given to extreme burns victims, involves spraying healthy donor cells over the parts of the skin which are not healing.
Mrs Orange said: “Oakley’s skin is not healing as it should be. The operation is supposed to kickstart skin regrowth. If Oakley’s skin can heal, that will be half the battle.”
While Mrs Orange has been at her son’s bedside constantly, husband Steven has been trying to visit as much as he can while also looking after Oakley’s brother and sisters Maisie 13, Ellis, 12, and Tilly six.
Oakley Orange in hospital
The family were able to spend some time together on Christmas Day and were all with Oakley when the clock struck midnight on New Year’s Eve.
Mrs Orange said: “It has been so hard for everyone but the children have been amazing considering what they have gone through and the fact they haven’t had their mum around. The holidays have been about us being here together as a family.”