Exploring Holland: I Won!!

Saturday, May 22, 2010

I Won!!

There is a Sanfilippo conference in the UK at the end of August. The MPS Society offered 2 scholarships to parents who would like to attend. I was selected!! I am SUPER excited to learn about the latest developments in research. It is going to be fantastic to be back in London for a few days. The city holds such special memories. I can't wait to explore and remember. It will do my heart good.

5 comments:

Jonathan and Jessica Robson said...: wow. that's such good news. happy for you.; May 22, 2010 at 3:03 PM
Joanne Huff said...: Congratulations, Shannon!! That is wonderful, wonderful news. I am so happy for you!

Joanne; May 22, 2010 at 8:51 PM
Andrew said...: Congrats!!; May 23, 2010 at 3:52 PM
Anonymous said...: Congratulations Shannon! That is really impressive ... you will be a great representative for parents and what a wonderful opportunity for you!; May 23, 2010 at 10:15 PM
thefaceofhonestyandreality said...: that is sooo wonderful!!!! Congratulations!!!!! You really deserve it!!!!!; May 24, 2010 at 8:08 AM

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What is MPS IIIA / Sanfilippo Syndrome

Sanfilippo Syndrome is a recessive autosomal genetic disease. Children with Sanfilippo Syndrome are missing an essential enzyme needed to breakdown and dispose of long sugar chains in the body called mucopolysaccharides. also known as GAGs. Because these sugar chains cannot be broken down and disposed of they accumulate in the cells causing progressive damage. Babies and young children with Sanfilippo Syndrome appear normal, but symptoms begin to appear with age as more and GAGs build up in the cells of the body. There are 3 stages to the disease. Stage 1 the child begins to lag behind peers and begins to display difficult behaviors. Stage 2 the child losing his/her language, becomes hyperactive, chews on everything, and has sleeping difficulties. Stage 3 the child slows down, becomes dependant for all mobility and loses the ability to chew/swallow. There is no treatment or cure for Sanfilippo. Life expectancy varies.

Inspiration of Blog Title

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 flight attendant 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 who 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 being 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 for some time, the pain of that will never go away...because the loss of that dream is a 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.