Support for baby millie's Hurler Syndrome Battle

My sister isn't one to ask for help, but I cannot imagine being in her shoes right now. Her beautiful baby has been diagnosed with Hurler Syndrome, and will need to undergo multiple treatments and testing including a bone marrow transplant. She will then be in the hospital for atleast a month. This isn't a well known disease and even with everything this poor sweet girl will have to go through, there is no cure, just a path to hopefully stop the progression for now. What we currently know about this disease is that it affects cognitive abilities, causes cardiac issues, joint issues, and many other things. The survival rate isn't well known either, but as of right now it seems low. We're hoping with the transplant, everything will be okay, but with all the doctor appointments and complications I know it will cause more strain. I'm starting this because I want the best for my sister and her beautiful family, I wish there was more I personally could do and I know times are tough but any support of any kind would be greatly appreciated. We're hoping for the best, keep this sweet baby in your prayers.