Newborn in starship

My grandson was born just over two weeks ago and he was in icu straight away as he had issues with his breathing. He recovered from that and was with his mum in a ward when they discovered that he was tongue tied so they fixed that but then he was no peeing so he had to go back to icu. While he was there they thought he was not going to make it but he pulled through and they sent him to starship where he was again in icu but is now in a ward but he has been diagnosed with leach nyhan syndrome which is a rare disease but one that has no cure. He will have uric acid so will have issues with kidney stones. Also he could have muscle spasm like someone with cerebral palsy so he may never walk and there is also the risk of self harm. I am hoping that there are people out there who would be able to help his parents with money so they can get things like bottles etc for Holden and also so that things will be a bit easier until my son can go back to work. The reason for the bottles is so that his mum can Express and they can know easier whether he has had enough feed or if they need to stop him up with his tube.