What Is Hurler Syndrome?
When our daughter Kennedy was diagnosed with MPS 1, Hurler Syndrome, we didn't know what to expect. After 111 consecutive nights in the hospital we had endured and seen so much that we felt truly blessed to be able to bring our daughter home, so many others had it much worse. After finally leaving the hospital there was one thing we knew one thing for certain, we had to do something.
MPS is considered an Orphan Disease because it affects a comparatively small number of people. Due to the rarity of cases, orphan diseases do not get the same amount of attention from researchers and companies that more prevalent diseases receive. It is easy for parents of children with orphan diseases to feel isolated and hopeless due to the lack of attention that their child's illness receives. The Kennedy Ladd foundation exists to be an advocate for MPS patients, families, and those suffering from other orphan diseases.