June 20, 2013
By Bob and Dotty Noyes
1559 West Shore Road
Our Promise to Nicholas
See the 2013 Update
Our grandson Nicholas was diagnosed three years ago with a life threatening disease known as Neuronal Ceroid Lipofuscinosis, or Batten disease. This brutal and debilitating disease will rob him of his vision, his speech, his mobility, and will eventually take his life. Nicholas turns eight on May 9th and like many of this disease's young victims, his future relies on finding a cure.
OPTN foundation has raised over $250 thousand dollars and been extremely busy this past year. Chris, our son-in-law brought together seven other nonprofit foundations like ours to form the Batten Family Coalition (BFC), representing other children with this disease. These foundations came together to organize and fund one of our major strategic goals for this year.
On November 11-12, 2010, 48 participants from around the world, representing the best from science, industry, and the National Institute of Health, came together for the first meeting in Bethesda, Maryland to discuss new approaches toward developing translational research for late infantile NCL (the type Nicholas has), and infantile Batten disease. The conference was a huge success as this was the first time this group has come together in a discussion. We are encouraged by the many new collaborations that may emerge. We will continue pursuing efforts to improve ways of transforming science into a cure. The second Scientist Meeting will take place in November.
Nicholas is on a Challenger baseball team. Along with his team, he was invited to participate in the CVS Caremark "All Kids Can" baseball Camp with the Boston Red Sox at Fenway Park. Make-a-Wish granted Nicholas a service dog named Shane.
July 4th at Joe's Pond was fun for Nicholas as he enjoyed swimming, cooking marshmallows & hotdogs on a stick over the camp fire, sleeping on the top bunk, and riding in the party boat to get ice cream at Hastings. Getting drinks at the water pump and riding in the buggy on Mom's bike are always fun parts of his visits.
In August Nicholas was invited to be the first participant in a gene therapy trial at Cornell, with only two weeks notice. Arrangements were made quickly, bags packed and then it was off to NYC for three weeks. Nicholas had brain surgery on August 24, which went very smoothly. Time will tell if this gene therapy will stop or slow the progression of his disease.
It took Nicholas a month to get his strength back, but today he is doing well. The decline in his health has slowed, but he is not getting better. He still has seizures and remains blind. His speech varies daily between 1 to 3 word sentences.
This disease is curable given enough money for research. The scientists are working hard but they need money to fund this crucial work. We are doing what any grandparents would do for their grandchildren. Please continue to help Nicholas in his uphill battle and continue to give hope to all these wonderful children who deserve a chance. The cure for this disease will light the way for many others.
Please check out our web site at Our Promise to Nicholas for upcoming events and fundraisers for 2011.
Nicholas has been a camper at Joe's Pond since he was two months old. He looks forward to coming again this year to cook those marshmallows and enjoy some fresh, cool spring water straight from the pump. These simple pleasures, and this special place, mean the world to him.
Bob & Dotty Noyes, 1559 West Shore Road, Cabot, Vermont
Our grandson, Nicholas Dainiak, has been a camper at Joe's Pond since he was 2 months old.
In May he will be 7 years old and looks forward to more visits. Sliding down Fillion's hill in the
winter and swimming and playing in the brook in the summer. Riding on the boat to the play ground
and getting ice cream at Hastings Store is always a must. Pumping water at the pump and riding
in the cart on Mom's bike. Burt Frye gave him a wonderful ride through the woods with his
horses and buggy last summer. Nicholas laughed so hard when the horses tooted!
Nicholas was diagnosed with a fatal brain disease called Batten Disease at five years old. Two years ago Nicholas was running in football and soccer, spoke clearly and was no different than his friends. Nicholas is now completely blind, uses a walker to get around, slurs most words, dementia has started and will eventually take his life at a young age.
This disease can be cured today if only there were enough funding. Our family is working hard to raise money to help Nicholas and many other children like him. You can make a difference in these children's lives too. Visit our website: www.OurPromiseToNicholas.com
The joy that we have with our children and grandchildren can be fleeting. We all hope to extend the times of wonder with our loved ones. Our grandson and other children with Batten Disease need help in their struggle so that they may live and grow and enjoy the many special times with their families that can often be taken for granted.