Click above to watch a report by ITV News Anglia's Hannah Pettifer
A schoolboy from Essex, whose odds of survival were just 30% when he was born, is thriving and helping others with a similar condition more than a decade later.
Callum Axford spent the first 8 months of his life in hospital, born prematurely with a hole in his diaphragm, a condition known as Congenital Diaphragmatic Hernia. His chances of survival were as low as 30%.
Now 10 years on, Callum is thriving. He lives in Benfleet near Southend with his parents Faye and Carl and his 6 year old sister.
Alongside his initial condition, Callum's been diagnosed with cerebral palsy, chronic lung disease and neurofibromatosis - all of which, his parents say, he takes in his stride.
The thing with Callum's conditions, they're all lifelong, they're not like go to hospital get fixed and everything is fine.. from the moment he wakes up, he's dealing with his conditions and always pushing himself to achieve the next thing. HIs gross motor skills, fine motor skills, he wants to do his buttons up by himself, it's all those things you take for granted that for Callum are massive.
I'm proud I can now eat solid food, I want to jump, I'm very close to jumping, I just can't get my feet off the ground and I'd also like to hop and skip which I can't do quite yet... I would like to crack jumping and hop and skip, be able to cut my food like mummy was saying.
Callum has regular hospital appointments, physio and occupational therapy, and a little help from his sister Sophie.
"At home I help him with going up the stairs sometimes, not all the time.... but it's hard to do it because he's heavy.... I cut his food up, I try to give him a chance at football but I don't think I do."
Since Callum was born Faye and Carl have been sharing his progress online to help others going through a similar journey.
"We're really big on raising awareness as well as supporting all the charities but also to give hope to others, I've had lots of parents contact me who've found out they're pregnant with children who have CDH and I know from when we found out, you want to find that one story that gives you hope that you can get through it."