Ben is taught in a mainstream school
As a judge decides whether a hospital can withdraw respiratory support from a severely disabled 17-month-old baby, the BBC News Website talks to a father whose son has the same disease - spinal muscular atrophy (SMA).
It was when Ben Morris was about eight months old that he first started to show signs he wasn't quite like other children.
His father Doug Morris explains: "He didn't seem to be progressing like his peers. His peers were beginning to sit up and crawl around and he wasn't."
So Mr Morris, and his partner Sandra Young, from Swindon Wiltshire, sought medical advice in August 2001.
DNA checks soon discovered he had spinal muscular atrophy and he was diagnosed as having had borderline type 1 SMA - a slightly less severe form of the condition than the baby at the centre of the legal fight.
When the couple were given the SMA diagnosis the only thing with which they associated the initials was baby milk - they had never heard of spinal muscular atrophy.
Mr Morris said: "When the neurologist sat there and said that potentially Ben may not survive beyond the age of two, that took a bit of getting your head around.
"Once we took Ben home, we spent the whole week locked up in the house - we were really rather numb."
But Ben has survived, and now at the age of five despite severe mobility problems he attends a mainstream school - albeit with a lot of assistance from a motorised wheelchair and the local education authority.
"That was a Champagne moment, Ben getting beyond his second birthday.
"At that particular moment, we both smiled for the first time in a long time," said Mr Morris.
The family acknowledges there are risks with Ben going to school - he is obviously exposed to more infections than he would be at home.
But his father explains that, like many children with SMA, Ben is academically gifted and his parents feel it would not be fair to him to keep him shut in the house.
He is given prophylactic antibiotics designed to ward off infections which for him could be deadly.
However, recent months haven't been easy and when Ben fell ill with a sore throat at Christmas, he deteriorated very quickly and ended up in intensive care.
There was a point when the medical team treating him at John Radcliffe Hospital in Oxford wanted to put him on a machine which would breathe for him - a ventilator.
Ben uses a motorised chair to get around
But his parents, being aware that invasive ventilation can result in the patient totally losing the ability to breathe independently, resisted and managed to find another solution after working closely with the medics.
Now the five-year-old swaps between two portable machines that help him to breathe by himself.
Mr Morris says it was touch and go at first and that Ben spent a long time working with these machines before he could, as he does now, breathe completely by himself during the day.
However, he uses a BIPAP machine, which ensures he takes in and breathes out the right proportion of oxygen and carbon dioxide, at night.
Mr Morris says he hopes all the options were weighed up fully before the 17-month-old at the centre of the current High Court right to life case was placed on a ventilator.
The family are aware that there may come a time when he may not be able to breathe on his own or at all without the use of invasive ventilation.
And then all the issues about whether Ben is kept alive artificially will be heart-wrenching decisions that they have to deal with.
Mr Morris said: "Nobody can really tell how we are going to feel at that point.
"We have to manage the condition on a daily basis to ensure that he as protected as much as he can be."
"Sometimes you have to say 'no' and take a step back and sometimes you have to hang on and say - this is worth fighting for."