MPS Awareness Day

MPS Awareness Day

Today is International MPS Awareness Day. It is not a celebration, but a day to honor the children who have so courageously lived with this disease. It is also our chance to have a unified voice to bring about the attention this group of diseases so desperately needs. There is no cure. And there is no treatment option for MPS III/Sanfilippo Syndrome. That has to change!!

Please wear purple or a purple ribbon. Tell people about Waverly & Oliver and direct them to the MPS Society's website. If you know of any medical professionals, therapists, teachers...tell them about this disease. So many children are diagnosed well after symptoms begin to manifest, because people are not familiar with MPS.

I would love to see a day when MPS can be diagnosed early and a treatment can begin immediately. I never want another parent to be told their child has MPS III, he/she is going to die much too young and there is nothing we can do about it.

Let's all work together to find a cure!!

Please send me photos of you and your family wearing purple/ribbons. I would like to post them on the blog to show the international support for all children with MPS.

Comments

aprilfoolwed said…

We're a little late getting our purple ribbons together, but I actually cleaned out Walmart's shelf of ribbon this afternoon (I am helping to make ribbons for your Yard Sale!). I hope to make at least enough for my family to wear them to our Kindergarten Karnival this evening!

May 15, 2009 at 2:26 PM

Welcome to Holland

By Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."But there's been a change in the flight plan. They've landed in Holland and there you must stay.The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.