The cold air blows through the concrete shed. It is just us in here. Still, I leave my mask around my face. I don’t want to be here, and I don’t want to have this experience. I think of my mother sitting […]
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’ […]
One of the messages that seem to repeat in my inbox are about how the book has made it easier for parents to help their friends and family understand a little bit about thier life with a child who has extra needs.
My experience in writing such pieces has taught me that the facts and figures are uninteresting to the general public, it is the people that strike a cord with them.
May 15th. On this International Day of Families I wanted to share with you all a little bit about my family. May 15th. This is three days before my eldest son turns 16 and it will be two days after his big […]
Have you ever bought a toy that did far more than it says on the box? It was supposed to be a stocking filler, you know that last minute thing you buy because you think you’ve not bought quite enough for one […]
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 […]
If you are a parent reading this, or an aunt, uncle, grandparent, cousin, sibling, friend, school teacher, a GP, a nurse, a doctor or even a pediatrician I want you all to come with me on this imaginary trip. It’s not a […]
In 2015 our family had no idea that May 15th was MPS Awareness Day. We were lucky. Most people have never heard of MPS (mucopolysaccharidosis). Why would they? It is not the rarest of diseases, but rare enough to be described […]
