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...
by siteadmin | Aug 4, 2023 | Uncategorized
Photos from Our Promise To Nicholas 2nd Annual Golf Outing, Friday June 18, 2010 Stonebridge Country Club. We raised $17,000. It was a great event! Thank you to Stonebridge Country Club. They went out of their way to ensure a successful day for us. We are proud to...
by siteadmin | Aug 4, 2023 | Uncategorized
Thank you for visiting the redesigned Our Promise To Nicholas web page! We are still under construction and the process of fine tuning continues. We wanted to share what we have so far as we continue to bring awareness to Batten Disease. In the next couple of weeks...
by siteadmin | Aug 4, 2023 | Uncategorized
I am not sure where the time went this month. Nicholas is been very stable in the last two months with no apparent changes. His seizures control also remains pretty good and only having seizures due to stomach bugs which lower his threshold. Nicholas is totally blind...
by siteadmin | Aug 4, 2023 | Uncategorized
Nicholas has started therapeutic horse back riding this month and he giggles and laughs the entire sessions. It is worth every minute of getting him to each session. He LOVES it! Attached is a youtube post you can see him laughing (I am laughing too as he keeps...
by siteadmin | Aug 4, 2023 | Uncategorized
Happy New Year! Nicholas has continued to be stable this month. He has had a few seizures this month but prior to this he went nearly 3 months with out a seizure. Luckily we were able to only change the time of his evening medicine and not add an increase. He...
by siteadmin | Aug 4, 2023 | Uncategorized
Christmas eve: “WOW mom! Santa left presents for us at our door step!” per William my 3 year old. A anonymous person in our community left a tag only saying Love Santa. Chris and I were so touched. I was looking at a picture of Nicholas and William at Santa’s Village...
