Hello! I cannot believe how long it has been since I have updated! Thank to JBWellman Designs, Jessica Wellman for our beautiful new look! We have been doing wonderful. Will has been participating in a Natural History Study for Sanfilippo MPSlllA. We have traveled to Minnesota for 3 visits and we are going back in August. Will has lost most of his speech in the last year. We have been realizing it but doing the study has magnified his decline. He has been doing well overall health wise. He did experience a couple of months where he was feeling unwell with no explanation as to why. He is doing much better now and is smiling and happy once again. He graduated 3rd grade and will be attending intermediate school next year. This has me more than anxious. A new set of teachers to learn Will and his ways. Nicole is doing well and had a wonderful year at her new school. She will be entering 7th grade in August. We are very happy with her progress academically and socially. She is enjoying being involved in plays and music theatre locally. She will be on the middle school volleyball team this year and is anticipating a fantastic school year.
I hope you are happy and well. As always, thank you for checking in on us and please continue to pray for a cure.