Help baby Precious

Hi everyone
Our daughter was born on 22nd July 2008 with cleft lip and palate. We were aware that she would have this problem, but that was all. Shortly after her birth we were told she had microcephaly (a small skull)and they wished to perform an MRI scan on her. She was admitted to hospital at 1 week old due to losing nearly a pound in weight! They did the MRI scan and found that she has a rare disorder called Holopresencephaly. It meant that her brain had not divided properly. We were of course devasted at the news and are still trying to come to terms with it. They have done bloods tests, and also found a hormone deficiency and she has Diabetes Insipidus..a lot of problems for a 6 week old baby.
Our dilenma now is that I will have to stay at home to care for her 24hrs a day for the rest of her life, and we have 2 other children whom my husband looks after. We always hoped on getting a mortgage one day to provide a secure home for our children, but that will never happen now. We live in a run down council estate which is due to be demolished in 2016. Our daughter Precious will need a sensory room, and special equipment, wheelchairs, and much more.
We would be grateful for any help anyone can offer us.
Thanks for listening
Precious’ mum and dad, and siblings