We Are Not Alone
We had the wonderful opportunity to meet another family who has 2 children with Sanfilippo. Hannah is 5 and Aiden will be 1 next month. They were both recently diagnosed and have been at Duke all week (they are from Seattle). We arranged to meet half-way last night at a McDonald's. Neither of us has ever met another family affected by MPS. The mom, Penny, and I have spoken on the the phone and exchanged e-mails, but it was so nice to finally meet her.
The McDonald's had an indoor playland, which worked out perfectly for the kids. We ate and let the kids run around the play area. The girls were fairly indifferent to one another, until right before we left. Hannah plopped down in front of me and Waverly joined her. They just stared at the camera while I took as many pictures as possible. Here are a few. The Dads and kids also played "Ring Around the Rosey". I love that picture - notice the girls are holding hands!!
It was so nice to have a time out with another family that required no explanations of behaviors...just total understanding. We had a great time and we can't wait to do it again.