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 feet, legs and walking ability are changing or just that his feet are getting bigger. According to his physical therapist he should be able to wear these AFO’s all the time and feel comfortable. He is much more stable withthem on but at home he still desires to get around in bare feet most of the time. He needs assistance because of his falls and it often is because his eye site is not good.
I did get Nicholas fitted for a wheel chair this week which will take about 3 months to come in. He clearly does not need a wheel chair yet but we are trying to be proactive in what he needs in the future. It was not an easy day for me to get this ordered but I held up my front well until I starting thinking we need a new car to fit the wheel chair, walker and service dog (we get in January). Honestly I cried when I got home but Chris reminded me not to loose our hope for Nicholas. Our goal is to fund a cure (gene therapy study in NYC) and save these children with batten disease.
Nicholas is still eating well, he can feed himself (like an entire 14 oz steak at Bugaboo Creek). However, I still help feed him when not at a restaurant. He is looking forward to going to Disney this month to see Buzz Light Year. We finally finished the video for the dog and sent that into the agency. We had him meet a some friends with dogs andeach time another friend came to our house with their dog Nichoals thought the dog was for him. January can not come soon enough to get the dog.
On a good note we have been extremely busy with fundrasing here. October 2nd was Our Promise To Nicholas Gala at the Manchester Country club This event was coordinated by a Bedford Moms Kim Naoti, Chrisann Dalton, Marie Obreiter and many moms in the BedfordNH mom’s group. Thank you: we could not have put this event together with out your volunteered work. We raised about $25,000 at this event. We had 116 people attend our gala, great food, excellent music from the Jimmy LeHoux band and a cellist Luis Leguia from the Boston Symphany orchestra. We had raffles and silent auction items which were all donated to our foundation to be sold. We showed our video, Chris spoke about Nicholas and Batten Disease and the gene therapy study in NYC. The event went off without a hitch.
Our next event was at the Russell’s Garden Center in Wayland MA. They raised a total of $900 for us. The garden center had a fundraiser raffle for us on a day they have their fall festival with music, food, and tractor rides. Thank you to David Johnson for putting this event together and also a thank you to all the Russell’s employees who donated for the raffle items. It truly touches our heart with your generosity and kindness toward our son, my mom Dotty Noyes and our family.
Vermont Quilt Fair on Saturday October 10th in Stow Vermont. My sister in law Amy Kolb Noyes sold her grandfather’s handmade jewlery at a quilt fair in Vermont and made $420. His name was TP Foote (whom passed away in 1996). The jewlery was given to Amy’s mother Sue Foote Kolb (who passed away in January 2009) So the money they made from selling this jewlery is in memory of Amy’s grandfather and mother. We were so touched Amy Kolb Noyes donated this money to Our Promise To Nicholas foundation. Thank you from the bottom of our hearts.
We also had the Bedford Outdoor (not so scary) halloween movie Night on Saturday October 17.
We raised $3700.00 at this event.
Thank you to Jannette Mooney, and her employees Kristy and Ann’s families, the bedford mom’s club, Geoffstown mom’s club, Bedford yahoo group, Bedford Meat House for burgers and hot dogs, Cinemax Movie Theather in Hooksett NH for donating the popcorn, Granite State Line for donating Beverages, Coke Cola company for donating soda and water, Chris Malloy and Community Events LLC, St. Anselm college students, Allie and Amy Paquette, Dotty and Bob Noyes for donating the pumpkins, Mac’s apples for donating the apple cider and music by Chad Verbeck of Rockspring. It was a real fun event to put together, go to and work at. Despite the cold weather everyone bundled up, ate pop corn, hot cider and watched Charlie Brown Great Pumpkin and BeetleJuice. UnfortunalyNicholas did not attend this event as he had a stomach virus and had 2 seizures which just knocked him out for the day.
September 25, 2009 Roys Hawaiian Grille, Bonita Springs, FL. Gene Therapy & Batten Disease Dinner by Kelly & Dr. Nicholas Dainiak as guest speaker on Batten disease. Thirty people attended and $1,100 was raised. Thank you Kelly Dainiak for putting this event together for us.
1. Battle Batten Disease Decathalon
Sunday November 8, 2009 St Anselm College, Manchester , NH
St. Anselm has chosen the Our Promise to Nicholas Foundation as their charity to help in 2009. The students are required to raise money for a charity annually as part of their curriculum requirements. See tabe on Welcome page for more informaiton and registration forms.
2. Batten Disease Awareness Dinner
Fleming’s Steak House Naples FL
November 6, 2009.
Kelly and her father Dr. Nicholas Dainiak (Nicholas Grandfather) will be the speaker
3. BBQ Bash
The Anheuser-Busch Facility in Merrimack May 22, 1010
NH Sandra Soler is the contact person for this event. Further details for this event to come. Stay posted.
On-line Fundraisers
Facebook; Dan Noyes; 2,000 members strong on our Cures page and donations too. Adding our Nicholas Video to the site is being worked on.
The fall we had a fun surprise from the Bedford Police. Nichoals and William enjoyed checking out the police car. But I think Nicholas mostly enjoyed yelling into the loud speaker of the police car “PULL OVER” with all the lights going. We also went apple picking at a local farm.
Lastly check our our video. Thank you for all your support for our foundation. We will continue to fundraise to support batten research studies to go forward. Our children do not have time. Here is Our Promise To Nichoals Video.
