Awareness – help spread it!!!!

(Genetic &) Rare Diseases Day- February 28th.

That meant absolutely nothing to me, hell, if I’m totally honest, I never even knew there was a day dedicated to rare diseases.
Like all of us, I believed I would never ever have to worry about a rare disease, or a genetic one.Ever.

I discovered this day when my child was diagnosed with a rare disease.I was actually trying, at the time, to find out more about his condition when someone had posted a youtube video entitled “Jeans for genes- we are rare, show you care”

I hit the play button.

I’m not going to bombard you with figures now, don’t worry!

I sat with a genetic counsellor, after Ethan was diagnosed with Mucopolysaccharide disease type 2~ MPS2 (Hunter Syndrome)for short! I took one thing from that meeting and one thing only:

“If every potential parent were to get genetically tested before having a baby, they would simply not risk it”~ that is a fact.

That blew my mind, immediately I felt amazed and blessed that my other son did not have MPS. (My last baby doesn’t either)

This day, February 28th is to let all of you out there know, that having a rare or genetic syndrome, is in fact, not that rare.

It could effect you; it’s all about the genes!

So please, wear jeans it’s not a big deal, but to me and thousands, all over the world it is a huge sign of support for those living with conditions like MPS.

Take a picture! Instergram it! Tweet it! Tumblr it (please tag me!) Facebook it!

Tell someone about Rare Diseases Day~ tell them about Ethan!

To show my support I will be wearing Purple, as it is the international colour of support for MPS, and I will obviously be dressed proudly in my jeans!

Thank you for reading and sharing this!
For more information checkout these websites
www.rarediseaseday.org
www.mpssociety.ie

Leave a Reply

Your email address will not be published. Required fields are marked *