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.


Popular Posts