It seems logical to me that in the beginning most parents struggle to understand what has happened to their child since knowing what has caused it opens the possibility that something can be done about it.
With few exceptions that I can think of, the knowledge though usually comes too late to do any good. Certainly defects, caught in time and corrected, can greatly increase the quality of life and often its length.
In Segev's case, the deficits he was born with are both myriad and profound. Born as he was with severe brain damage, that occurred while developing in utero, his body was in essence, programmed to self destruct. His kyphosis, as seen here, has a major impact on his health, particularly his lungs. Several aspects of his autonomic nervous system are damaged allowing, for example, reflux (regurgitation) to occur and which led eventually to permanent lung damage. Some of the insults to his body have been acquired, such as the apparent damage to his phrenic nerve from the implantation of a VNS device to try and combat his permanent array of seizures, which led to paralysis of his diaphragm and subsequent lung collapse, accelerating his deterioration.