My son has been diagnosed with a genetic pathology of VRK1 non5q SMA. It appears to be very rare with little to no information about it.

He has advanced atrophy of his right calf muscle and the beginnings of atrophy in his other calf. His gate is affected and has trouble walking normally. He lives in San Francisco and is currently being seen by 2 different neuro-muscular doctors at Stanford and at UCSF. He is being told that at this time there is no treatment and there is no cure.

Can anyone give me some insight or lead me in the right direction to get some answers for this diagnosis?