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 about an awareness project called FlyforMPS; which hopes to connect families living with MPS from all over the world.
This is something that, as a parent of a child living with MPS, is invaluable – there is nothing more isolating in this world than being told your child is terminally ill.
Imagine if you could reach out to the nearest family (physically) to you?
The idea of this awareness campaign is simple- it’s all about connections.
Making connections with other families in similar circumstances is part of the campaign while raising awareness by building your plane and taking it to the skies …
Sound interesting ?
You read about Ethan why not make a plane in his honour and email it off to some of your family and friends or if you know another family living with MPS send it to them!
It really is a simple idea – here is more information FLYforMPS and I hope to see some of your planes flying around Twitter too! #FlyForMPS