Hello 
welcome and thank you for sharing your unique story. I can imagine you get “twins, what a handful” and people don’t even realise the half of what’s going on! It might be worth having a browse through this category - parents of someone living with kidney disease. It could be wroth getting some support from others who are in similar situation even if its not quite as specific as having HHRH. I hope you manage to find a bit of support and advice
Beccy