Happy 8th birthday Nicholas and Happy 11th Anniversary to Chris and I! Nicholas birthday was on May 9th and it is still hard to believe that he turned 8 this year. It actually was a very tough day for me to get through knowing Nicholas’s future. I spent part of the day going through his baby pictures when he was born and how besides getting married to Chris it was one of the happiest days of my life when Nicholas was born. (William’s birth too!). A big 9 pound 3 oz baby boy and absolutely beautiful at the first sight of him. I cherish every picture, video and memory of Nicholas when was younger and running, talking and laughing. One of the few words he gets out with great difficulty now is “mom” and I check him every day. Is this the day that he will not be able to say it…??? I grasp onto every last inch of the Nicholas I have today because it may be gone tomorrow. He is quickly loosing ground each day and each week. He is crying more out of frustration that he can no longer easily throw a ball, jump up on his knees and play with his toys that he played with only a month ago. We do these things for him and see the happiness in his eyes. As I am quite sure he can clearly understand us and the world around us.
It is getting more and more difficult to feed him but I am moving forward with finely cut foods, sauces, gravies, ketchup’s butters to keep him happily eating with thickened liquids. We did change back to a “thick it” brand fluid thickener because we think the “simply gel” thickener was leaving him with too much gas and upset stomach. His weight remains stable at 58 pounds.
His walking is very difficult. He got a “stander” for at home and he now uses this 1 hour twice a day. This is good for his bones, digestion and overall health. He continues with all his therapies at school and after school. He has good days and bad days so we all try to take Nicholas’ lead in therapies. He continues therapeutic horse back riding but as I watch him each week he has a very difficult time keeping his head held up but I can see he does enjoy a few laps around the rink with a few smiles.
I don’t mean to make this post be so gloomy but I have to be honest on the way Nicholas really is today. As this web site is for family and friends it is also my place for me to organize my thoughts. 🙂 Thank you to my family and friends that continue to have endless support for Chris, William and I. Thank you for supporting Our Promise To Nicholas Foundation we will continue to work hard for a cure so no more children will have to go through the suffering that Nicholas goes through.
On a good note: Our local New Hampshire news station Channel 9 WMUR did a small story on Nicholas and Batten disease. It will air on Friday June 3 at 11PM and then air again the next day at various times through the weekend. Will post the video when it is out. We also have not seen it! Click here to view our story on TV
We did take a trip to the beach for mother’s day and both boys enjoyed the atmosphere despite being freezing cold water. Only William braved going into the water.
We went to Story Land and a indoor water park this month in North Conway NH. Nicholas still enjoyed the roller coaster and water log flume ride. He got his face painted as usual like spider man and most of the day he was all smiles. He loved the water slides at the water park. Chris and I hiked up 4 flights of stairs with him which was tough but worth every minute to hear him yell with delight for the 7 seconds to the bottom!
Fore Nicholas Golf Outing Saturday June 25, 2011 2 PM start at Stonebridge Country Club in Goffstown NH, 18 holes of golf with golf cart include, goodie bag, dinner, live band, prizes, Raffles. Don’t miss out!!!! (Sign up here )
Fore Nicholas Charity Dinner Saturday June 25, 2011 a 7PM Stonebridge Country Club Goffstown NH. Local Live Band, Lobster, Prime Rib, Grilled Chicken, Raffle, Silent Auction here(Sign Up Here ! )
I saw your news story on WMUR. I am a mother to a two year boy, and to be honest, Nicholas' story just breaks my heart. The courage all of you have shown and fortitude -- to not just cope but help others -- is inspirational. You are all in my thoughts and prayers. Keep up the great work!
Your all in my families prayers.
I read this story of Nicholas and felt it in my heart to help him find the only cure. I dont want anything in return not even a thank you which is why i didn't leave my information. For over seven years I've studied metaphysical healing and the power of the mind to heal all sicknesses. Please listen and apply. We are all energy. Underneath the skin, muscle, bones, atoms and electrons we are Energy. Constantly moving in motion. A negative thought creates a negative vibration as with a positive thought creates a positive vibration. The power of the truth wipes all false as light takes out darkness. We are a spirit form living in this body. Without our spirit we die. The spirit is created in the image and likeness of the creator who is whole, perfect, strong, powerful, harmoniest, loving and happy. Our thoughts create our reality the outside world. You cannot have a disease in a body that is at ease. Start now to help nicholas create in his mind a bright future. Visualize him as already being healed. Feel the feeling now what you would feel if he were healed and the disease was gone. Have him close his eyes and visualize five years from now going to school on the school bus playing outside with friends or joining the baseball team. Never talk about the disease only the cure as it already left his body. Have him repeat the truth that he is whole, perfect, strong, powerful, harmonuise, loving and happy throughout the day. Nicholas's spirit is very powerful. For now on don't dwell on the sickness but become health consciousness. No medicine or doctor can do any better than the power Nicholas and you as his parents can by the power of visualizeing him a healthy active long living boy. His cure and power comes from within. In order to change his outside condition he must change it from within. I look forward to seeing him at his high school graduation :)
BATTEN DISEASE HAS NO CURE THERE WILL NO HIGH SCHOOL GRADUATION WE NEED MORE MONEY FOR RESEARCH AND MORE SCIENTIST TO DO THE RESEARCH SO ONE DAY THERE WIL BE A CURE