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 we left for our trip. No fever but a lot of myclonic jerks and had to spend a day in bed. He slowly got better but spent a lot of time in his stroller as any illness Nicholas gets
physically sets him back for a few days. Luckily we brought his walker and by the end of the week he was literally running down the hotel room with his walker. So he was better. It was a fun vacation, Nicholas mostly enjoyed seeing his character friends Buzz Lightyear and Woody as well as riding the roller coaster about 5 times with family.We were joined by both sides of Nicholas’s grandparents, aunts, uncles and cousins. It was a fun time!
We had another batten disease awareness dinners in Naples Florida on November 6. This event was put together by Nicholas’s aunt Kelly and his grandfather Nicholas Dainiak, MD spoke about the science of the disease, what studies are out there for our children and about his grandson Nicholas. This event what a great success raising over
$2500 and had about 20 attendance.
We also had a special event from the make a wish foundation this month. Nicholas was asked to place his painted hands on the Manchester Verizon Ice Arena and have a special meeting and pizza with the Manchester Monarch Ice Hockey Team. The boys also were lucky to received autographed hockey shirts from the players. It was a night of all smiles for my boys.!
The Decathalon Battle for Batten disease Fundraiser hosted by Saint Anselm College in Manchester NH. There was a great turn out of around 250 students playing varies games through out the day from basket ball to jump rope to water balloon toss. My boys had a blast. The event raised $2000 for our foundation. We greatly appreciate the students putting this event together for us.
How is Nicholas this month? His vision continues to decline more and he relays more on voices and sound. I don’t know what he can see so assume not much. He still gets around our house easily. We did have a vision specialist come view my home. She gave me a lot of great ideas to help Nicholas. He continues to go to school everyday with a nurse.
He is more willing to let nurses feed him but he still can feed himself (but not enough). Nicholas has not lost his imagination and spirit which keeps us going. His seizures and myoclonic jerks have been better controlled this month.
I met Nicholas at school to make a pilgrim village with him in his 1st grade class. Figuring out how to make this project interesting to Nicholas was a small challenge. But we used large figures and he was more than happy to make the ti pi and pilgrim house. It was a cute day but I mostly enjoyed having his buddies come up to him and say “wow Nicholas your doing a great job!” It was so endearing to hear how excepting his schoolmates are of him.
We now have the services (thanks Suzy and Mariana!) of a professional fundraising consultant to help us with our fundraising. We have had over 18 fundraisers in 9 months and now have a little more than 130K which is excellent but done so with a lot of work from family, friends and our community. We continue to have a bi-weekly meeting with board members, family and friends to discuss upcoming fundraising and updates in research. I think having a professional join our foundation is a positive step in the right direction. We would like to move our foundation forward faster as we have a great team.
Lastly but not least we celebrated William’s birthday this month as he turned 3. It made me feel very fortunate to have William in our lives and he does not have Batten disease. But it also made me feel the sorrow toward the families with two or more of their children with this disease.
Chris reminded me this month that Nicholas really has made his mark in life. More than Chris and I had as kids and adults. Nicholas has become a little celebrity in our town with all our fundraisers. Everyone knows him, and hopefully gets inspiration from his story. He has certainly tied our families together in a common goal. Two families that really did not always see eye to eye when Chris and I married now go on vacations together and are deeply involved in our fundraising. Who would have guessed this would happen. I also often hear people tell me that our foundation and my son Nicholas made a impact on their families. They put themselves in our shoes. What would they do if Nicholas was their kid? Cherish what you have, cherish your own families and find the positive. Everyone has a purpose and Nicholas impact in life has been bigger than I could have imagined. We are lucky. Thank you again for your support for our foundation.
Shop for a Cause:
Thursday December 3, 2009,
Bedford Newcomers Group has put this event together for our foundation. 6:30-9:30PM. Sophia Johnson’s house 74 Rosewell Road, Bedford NH. For more information about coming to this event please call Sophia at 603-488-5345
Saturday December 5, 2009,
Littleton MA. 9AM to 3PM.
Location: Littleton Middle school at 55 Russell Street, Littleton MA.
Crafts, food, Santa and 40 different organizations. Great place to buy some Christmas gifts. Contact Nancy Morrison at firstname.lastname@example.org for more information
Mary Kay Cosmetics Fundraiser for Nicholas:
Mary Kay products are being sold by a local Bedford NH mom Andrea Izzo. From now until December 31st. Spend $30.00 on products and 25% of your sale will go toward our foundation. For information to order her products go to: www.marykay.com/aizzo Thank you Andrea!
Our Promise To Nicholas Charity Concert:
Friday December 18, 2009,
Bedford High School- 47B Nashua Road, Bedford NH. 7:00PM to 10:00PM.
There will be food and amazing music featuring Kascade, The Yellow Team, Night of Our Lives and Score 24! These talented bands are local and from New York! The genres range from electronic, acoustic, rock, punk rock and it will be a very fun-filled night! Cost: $7 if pre-ordered, and $10 at the door. Pre-ordering at Bedford High School.