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...
by siteadmin | Aug 4, 2023 | Uncategorized
We took a trip down to Disney World in Orlando Fl at the end of last month and stayed for Halloween. It was a fun trip despite Nicholas getting sick as soon as we got down there. We think it might have been from receiving the H1N1 vaccination only a few days before...
by siteadmin | Aug 4, 2023 | Uncategorized
Finally Fall. Nicholas continues to be doing well. He has been using his walker at school sometimes and wears his AFO’s (leg braces), we just got him re-casted for the AFO’s because the first pair did not fit properly. It is difficult to determine if it is because his...
by siteadmin | Aug 4, 2023 | Uncategorized
Nicholas has been doing excellent for the past month. With only a few seizures last weekend. He had gone almost 4 weeks without a seizure prior. He is moving forward in physical therapy with great strengh and determination. He has started 1st grade at the...
by siteadmin | Aug 4, 2023 | Uncategorized
This month we have been so busy. I will start first with how Nicholas is doing. He really has continued to decline this month both with his eye sight and mobility. It has been very difficult for us to watch this rapid decline. Here is a picture of Nicholas with a...
