Hello! Sorry it has taken me so long to post July’s notes. A lot has gone on here and I will start with the best news first!
William does not have Batten disease! He is not a carrier of my gene defect. We are still waiting for Chris’s gene testing to come back. The fact that he does not carry my defective gene is the best news. I bursted into tears while Nicholas was in my arms at the doctor’s office. I just cried. We are just so lucky and thankful. We can finally put this worry behind us.
So we trudge ahead to fight for Nicholas. He is doing fair. He had a great stretch of about 6 weeks with few seizures during the month of May/June. He stared summer school about 3 weeks ago now, had a few cluster seizures and had not returned to his baseline. He is about 1 week with out a seizure currently but having some myoclonic jerks, legs tire easy and more irritable and has a difficult time focusing on tasks. We are trying to figure out where to adjust his medications which is a very difficult task as he has hardly any leway for change. We are working it out with our neurologist at Children’s hospital. We are scheduled to have a home 24hr EEG done this week which will be an new experience. Nicholas may be having subclinical seizures.
We have been keeping busy. We went up to Vermont for the 4th of July weekend. Nicholas and William enjoyed playing in the brook, making smores, watching movies and swimming in the lake. But, I think Nicholas’s biggest highlight was sleeping in the top bunk. Grandparents rule at the camp:once your 6 years old your allowed to sleep in the top bunk. So Nicholas and I slept in the top bunk for 3 nights. It was quite an experience which made me laugh out loud and left Nicholas in complete smiles!
We just got back from Storyland and a visit to Thomas the Train up at North Conway. The boys loved it. Nicholas rode on the Tea cups 3 times with his dad and enjoyed the “ball” room, which is a room filled with foam balls you can launch at each other. A boys dream come true! A short vacation was fun but we are extremely careful with Nicholas not to tire him out or overheat him.
Nicholas continues to have PT 4 times a week. I continue to feed him most meals. His vision seems to have declined more as he will call me and I am only 1 foot away from him. He gets around well and is not afraid but continues to be a daredevil. His hearing is very sensitive and he points out sounds that I can barley hear. He still loves TV and I am encouraging him to listen to more books on CD so he does not have to strain to see the picture. He still loves riding his big wheel and bike but is more careful and I am right next to him running up and down the driveway.
We had a great success at our Fore Nicholas Golf tournament on June 20th. We had about 113 players for the day, 80 raffle items and about 15 auction items. We raised around $25K in this event. A unbelievable event which could not of happened with out the support from friends and family.
Nickles for Nicholas- Harmony Learning Center fundraiser June 16, 2009. Raised $650.00 for Our Promise to Nicholas foundation. Thank you! It was a great event with a BBQ, bouncy houses, face painting, cotton candy/popcorn machines and raffle items. It was a fun event. Thank you harmony families for putting this event together for our foundation.
Square 1 art fundraiser- Art work has been sent to families who’s children participated at Riddlebrook elementary school. 33% of their purchases will to to our promise to Nicholas foundation.
Jean Day Fundraiser- Not so Plain Jane’s/spa in Manchester NH- Held a gene day for our foundation. They raised $150.00 for our foundation. Thank you!
FUNDRAISERS COMING UP
Saturday August 8 and Sunday 9th Nicholas Bake sale fundraiser: The Antique and Classic Car Meet takes place in Stowe, VT. Located on Nicholas Field, Vermont Route 100, south of Stowe village. Look for Our Promise to Nicholas foundation Posters at this event, a bake sale and raising awareness to our foundation. www.vtauto.org/10985_Antique%20Car.pdf Amy and Dotty Noyes are contact for this fundraiser if you want to donate baked goods. email@example.com
Friday August 7- Bounce for Nicholas, Location: Bounce U, Bedford NH. Time 4-8PM, Entertainment: Kricky the Clown-face painting and balloons, Steve Blunt a children musician. Bake sale, Raffle items. $15/child, $5/adult. Contact: Bounce U at 603-621-4011 or Heather @ firstname.lastname@example.org 603-617-2023. See our “bounce for Nicholas” tab on this web site for more informaiton.
Sunday August 9-Mud Hog Race– Gunstock Ski Mountain, Gunstock, NH Time: 11AM Go to: www.mughograce.comfor more information and registration. Our dear friend Jannette Mooney will be taking part in this race for Nicholas. We do need volunteers in cheering her on in this event!!! GOOOO Jannette!!!
Monday August 10- Fore Nicholas Golf Tournament in Connecticut– Farms Country Club, Wallingford CT. Registration at 8AM with 9AM scramble start. Limit to 120 players. Cost: $175 which includes golf carts, luncheon, raffle and silent auction. For more information visit this web site www.tournevents.com/battendisease. Or contact Erik Dainiak at 203-597-7744
Saturday August 15, 2009 Break and Sweat for Batten Disease.Location: St. Elizabeth Seton gymnasium. 190 Meetinghouse Road, Bedford NH. 9AM- 11AM. “Come commit to fitness and raising money for this foundation by working out with your local fitness coach and beachbodies most popular fitness program.” Donations at the door. Contact: Chrisann Dalton at (603) 289-8160 or via email at email@example.com
Facebook Cause -Cure Genetic Brain Disease-Our Promise to Nicholas foundation. This cause is up and running thanks to my brother and sister in law Dan and Amy. So far it has 607 members and has raised $650.00. Please continue to send our cause to your friends and family to raise awareness to our foundation and batten disease. Together we can get closer to reaching our goal to start the gene therapy trial in NYC to save 5 children with Batten disease.
Friday October 2nd Our Promise To Nicholas Gala Manchester Country club, Bedford NH. Please join us for an incredible event to benefit the Our Promise to Nicholas foundation. Gourmet meal by Manchester Country club, hundreds of scrumptious desserts donated by local area bakeries. A unique performance by The Boston Symphony Orchestra cellist, Louis Leguia. A rocking performance by The Jimmy Lehoux Band. https://promisetonicholasgala.weebly.com/ for more information. Contact: Heather @ firstname.lastname@example.org or 603-617-2023 or Kim at email@example.com
IGive- Please continue to purchase on-line items from this web site and a percentage of your purchase will go toward our foundation.
www.itspersonalgifts.vpweb.com. a local artist, Mindy Shoals plans to donate 2.5 % of purchases toward our foundation. She sells personalized hand- made gifts. Beautiful work Mindy! Thank you!
Nicholas depends on us to continue to be strong and fight this battle with him. Thank you for your generosity and support toward our promise to nicholas foundation. Together we can save these children suffering from Batten disease. Research and a cure is ready… it just needs funding!