My one month old Niece Ellie has been diagnosed with Hurler syndrome. Hurler syndrome is a rare, inherited disease of metabolism in which a person cannot break down long chains of sugar molecules called glycosaminoglycans (formerly called mucopolysaccharides). Hurler syndrome belongs to a group of diseases called mucopolysaccharidoses, or MPS. There is no cure for this disease we can only pray that the treatments will help her live a normal life . With that being said Ellie has to go once a week for enzyme replacement therapy. When she is 6 months old she will have to under go bone marrow transplant. Currently they are looking for a doner and my bother, his fiancé and emorie and ellie will have to move closer to Nashville for 3 months while Ellie gets the transplant. We hate asking for anything but this was so sudden. We appreciate any help that you can offer even if it is just a prayer for sweet baby ellie ❤️

THANK YOU ALL IN ADVANCE !

https://www.nicklauschildrens.org/genetic/hurler-syndrome