by siteadmin | Aug 4, 2023 | Uncategorized
Nicholas is doing well. Check out this picture of him on his bike. I did not think he could a ride a bike. He jumped on his bike and rode down the driveway faster than I could say “NO!”. I could not believe it. Next see him back at soccer. We have missed 6...
by siteadmin | Aug 4, 2023 | Uncategorized
Wow what a week…or actually 3 weeks. Nicholas has been very sick for the past three weeks with many more seizures. It was a difficult time for all of us. We thought the increase seizures were from a virus, levocarnatine or even a possible bacterial infection. The...
by siteadmin | Aug 4, 2023 | Uncategorized
We learned on Thursday January 22 at Mass General Hospital in Boston that Nicholas has classic late infantile NCL. He has a defect in the gene CNL2, which impairs the production of the enzyme TPP1. We were prepared for the information but I did find it a bit...
by siteadmin | Aug 4, 2023 | Uncategorized
Happy New Year. Thank you for your touching emails and postings. Nicholas is doing well. He has had a few more seizures in the past few weeks and we have had to add a 12:30PM dose to his daily medications. I will be adding a tab about Nicholas past year of actual...
by siteadmin | Aug 3, 2023 | Uncategorized
Here is my first post. We boarded the polar express train in North Conway NH with 12 tickets the week before Christmas with family. This brought Nicholas tremendous joy to be on the train. He is an avid watcher of the polar express train movie and he knows every song....
