He was our first child and we didn't know he was poorly until he became very Ill at home. We had never heard of this illness before and noone in either of our families hav ever had it. He went on the transplant list last week and there's no saying how long we will be waiting for. At first we decided against it because he was doing well but then he kept getting infections and it was difficult to manage. Ammonia is such a horrible thing it kills brain cells and the impact on children is devastating. Iv spoken to lots of parents and the majority of them opted for the transplant route. Another cure is unlikely and even though a transplant is risky all being well the children have a better quality of life. Please pray for our boy and I pray you het the right help u need, the good thing is that ur son won't have brain damage as they controlled it from birth but maintaining this is the most important thing now. All the best