It is amazing, regardless of the ailment when a person is given mere weeks to live & blows that outta the water!
Because these parents are in the Britain, they don't pay a penny for this (treatment + staff checking on the kid every night), how much would this cost in the US? $180,000/year?
You did not have to travel to Great Britain to find this disorder. There are plenty in the United States with some surviving over 30yrs.
cant they put him on a ventilator come bed time??