Day 1 Down

August 09, 2010

Day 1 Down

Day 1 of the Natural History Study is complete. The kids did a superb job. We spent the first part of the morning meeting with the doctor who is in charge of the study. He is well known and respected within the MPS world. It was a pleasure to finally meet him. He is lovely - both Matt and I felt very comfortable with him. I spent some time with a developmental psychologist answering a ton of questions about Waverly & Oliver's current abilities, while Matt took the kids for a walk around campus. We had a few hours to explore the city after lunch. Then we met with an anesthesiologist to go over the protocol for Wednesday. They are extremely thorough and very familiar with the specifics of MPS.

We spent the evening at the Mall of America. The kids rode a bunch of rides in the amusement park area of the mall - they loved it. The Swiper ride was a huge hit and had both kids giggling out loud. Oliver loved riding a bear on the carousel and driving in Diego's van, as well. The kids were exhausted and both fell asleep in record time.

It is exciting to finally see Sanfilippo getting some attention. We are grateful that the doctors and pharmaceutical companies are working on finding treatment options for our kids. We are proud that Waverly & Oliver are part of the process towards finding a cure.

Comments

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.