May for us has always been a month to promote awareness around Mucopolysaccharidosis (also known as MPS. I imagine because it’s pretty tricky to pronounce Mucopolysaccharidosis!)MPS Awareness Day is May the 15th. For years, I have tried to make it a ‘known’ […]
I wrote about Tucker before on FamilyFriendlyHQ I am aware that sometimes the things I write are hard to read and that it can leave the reader feeling sad; but when I choose to write about Ethan and his life, I cannot leave […]
Raising awareness for Hunter Syndrome (MPS type 2) is always something I am happy to do. Raising awareness costs people nothing but time, sadly time isn’t something many of those living with MPS have. I was asked to write a little piece […]
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Tagged grief, Huntersyndrome, mpsawareness, rare