It has been awhile since our last update, but we are having so much FUN this summer it’s hard to find the time! We’ve been swimming, biking, reading, concerts in the park, and keeping busy with numerous summer camps. Just a “normal” summer, and taking advantage of the great weather.
Peyton and Kayla continue to do well with their Cyclodextrin treatments, with no adverse effects so far. They seem to be hanging in there, with no noticeable progression of symptoms from NPC. Research into how we can deliver the Cyclo via a pump, instead of having to come to the hospital is still our top priority! We are now doing the infusions once per week, on Wednesday’s for the rest of the summer. The schedule is on the Hadley Hope Website Calendar, for anyone that wants to stop by and say hi. The kids have had many visitors, and love the company, thank you very much!! Many people have asked what they can bring for the kids, so here’s a few ideas: Games to play, crafts, pictures, postcards (Peyton collects these!), and they love a good joke!
The link below is the blog page for the Dean of the College of Science from U. of Notre Dame. He and his wife rode their bikes from Boston to Dallas (2,200 miles), to raise funds and awareness for NPC research. An amazing effort, that is much appreciated by the NPC community. It is an interesting read about many of the NPC families and scientists they visited along the way: http://blogs.nd.edu/gregcrawford/
Thank you again for all of the continued emails, and notes of support!
Bryan and Laura