by siteadmin | Aug 4, 2023 | Uncategorized
We were called. We were called/invited for Nicholas to participate into the phase I gene therapy trial in NYC but were given a two week notice. When Chris told me the news my stomach burned and I filled with anxiety. This could be Nicholas’s only chance to live. ...
by siteadmin | Aug 4, 2023 | Uncategorized
Below are 5 letters that I wrote to family and Friends while we were going through our journey in NYC. I thought I would share them on my web site. If you want a more detail and more pictures of day by day of our journey in NYC read September post 2010. Update Letter...
by siteadmin | Aug 4, 2023 | Uncategorized
Nicholas had a busy summer. Here are some more pictures from time at the Red Sox! He continues with PT, OT, Speech, Horseback riding and Massage every week. Never a dull moment here! Here are a few pictures from the summer. Thank you Laura Pace for setting this all up...
by siteadmin | Aug 4, 2023 | Uncategorized
July just slipped by so quickly this year! Here is another quick update on Nicholas this month. He is doing well and remains very stable. I am not noticing any significant changes in this last month. Which is good. Only one two day virus with a few seizures but...
by siteadmin | Aug 4, 2023 | Uncategorized
Welcome to our new web site! We love it! The month of June has been busy at our house. With the end of the school year and the beginning of summer. Nicholas remains about the same medically with still a few seizures a month due to various virus that we think he must...
