To date, Lewis has had thirteen brain surgeries; he has drug-resistant epilepsy and experiences up to fifty seizures a week.
But, even though he might die at any moment he says "every day feels special".
"My illness may define the length of my life, but it won't define how I live it. My disability gave me the ability to understand and help others. And now I finally feel like I am living."
This week Lewis releases his childhood memoir, Looking At The Stars
, in which he reaches out to all children who may feel isolated
in their lives.
With all the ongoing health problems, life for Lewis is a daily challenge. But he hopes to honestly share how he finds the strength to get through it, and lead a fun and fulfilling life against all the odds.
Only a fraction of his story has been told so far - and from the sheer physical challenges to the almost unbelievable bullying he has endured, his story is an incredible one.
In one Facebook post, on his 16th birthday, Lewis invited everyone to see how he faces head on the challenges in his life resulting from his ongoing illnesses, and it went viral.
Thirty million views later, Lewis is spearheading a campaign
, Friend Finder
, to make sure no one ever faces childhood illness alone.
His message will move and lift children and adults, and he hopes to change everyone's view about the lives disabled and ill people can lead.
On Thursday 12th April 2018 Lewis Hine will be at WHSmith, in Brighton, between 1-2pm, for a book signing.