help baby mathias rare condtion

Baby Mathias born on 1/21/2015 weighing 4 pounds 5 oz . During my pregnancy with Mathias we had found out at 19 weeks that there was something wrong it showed he had fluid on his brain and that his cerebellum wasn't measuring right and both of his kidneys was also enlarge .they recommended Us to get a amniocentesis done we went ahead and got it done 2 weeks later the results came back showing he has deletion on chromosome 6p and duplication on chromosome 14q and it was confirm that he has dandy walker syndrome to .the chromosome issues are rare they have no case like his so they didn't have much information they could tell us all they could do is give Us possibilities on how his health could be they told us to aboard him and of course we never did that . Mathias now is 3 weeks old he has had a very rough 3 weeks of life it has been a roller coaster for him. he got released from the nicu on 2/9/15 to go home and had to be airlifted on 2/11/15 back to the university of Iowa childrens hospital due to respiratory distress and now he is currently in the picu . sense he has been in the picu he has started to have seizures we are working in trying to get them under control . Doctors says it could be due to his dandy walker sydrome or due to the chromosome issues .its hard for doctors to know the cause of a lot of things at this point they are still learning as well as us with the rare chromosome issues that Mathias has they can't tell us how the future will be for Mathias . Being 2 hours away from home makes it hard as being like most parents we are staying in the hospital with Mathias and as of right now we won't know how long we will be in. Due to being away from home and not being able to work we would greatly appreciate any donations to help out with bills,food ,gas and any other expensive that comes up during our stay thank you so much.