Happy Holidays 2011. This is the letter that I sent out to 950 + friends of Nicholas as our OPTN 2011 memories. . Thank you for your continued support and reading my web site……

It is hard to believe it is December 2011 already and at the year end. Even though it is a busy time of year and it whizzes by so quickly….I do have to say I love hearing that Christmas music over the radio and in the stores. It makes me reflect on memoires the year and past years.
Where were we in the year 2011? In January we took a trip down to Disney World in Fl because Chris had a BDSRA (Batten Disease Support & Research Association) board meeting in Orlando. Nicholas still loved all the rides. Fortunately we were stuck down there for 4 more days than planned because of a huge winter storm at home shut down the airports in New England. Nothing like being stuck and Disney!

One of the best parts of the winter months was making memories in March where Nicholas participated in NEHSA which stands for New England Handicapped Sports Association. He skied Mt. Sunapee in NH. Nicholas was lucky to be guided by Tom Kersey who is a board member and executive director of NEHSA. We were honored to be skiing with him. This is a day brought tears to my eyes because it brought so much joy to Nicholas. He squealed in excitement as he went down the mountain, “Again, Again, Again” after each ride.

Throughout the winter and into spring Nicholas continued to ride his horse Collin in Goffstown through UpReach Therapeutic Horseback program. Nicholas loved riding but I don’t think his body always agreed as with each session it became more difficult for him to hold up his body on the horse. He rode as long as he could in to the summer but it became too difficult for him and we sadly had to stop this cherished activity.

In April the Mom’s Club in Bedford had their 3rd annual Easter egg hunt to benefit Our Promise To Nicholas foundation. There were approximately 400 children attended this event at the NH Sportsplex that raised $3,500. Nicholas picked up the first egg before the event began, and this became a heartwarming photo in the Union Leader newspaper. Thank you Bedford NH mom’s group for your volunteering and hard work to put this event together for us. And thank you to the St. Anselm College nursing students and the Delta Gamma Zeta Sorority members who all helped to make this a great day for the kids!

Nicholas started baseball in the spring. It was much more difficult this year but a few smiles from him made it all worth the effort to get him out onto the field. William did a great helping Nicholas and our crew ran around the bases with every home run.

On June 25th we had our 3rd annual FORE! Nicholas Golf Outing and Charity Dinner at the Stonebridge Country Club in Goffstown NH. Over 150 people attended this event and we raised $21,000. This year we were joined by Congressman Guinta and his wife Morgan, we rocked to local favorite band Common Knowledge band. The top prize this year was a 55 inch plasma 3D TV, and many other donated items make for great fun for all who attended. We thank a family friend Kathy Davis of Shaklee, ( who continues to give our foundation support!

School finished in the spring for Nicholas and we continued onto our summer fun. Going up to Cabot Vermont for the 4th of July, riding in Grampy’s old Model T, boat rides. Took a trip to North Conway to Story Land and Santa Village, joined his cousins at Lake Winnipesauke in NH for a swim in the lake and had the pleasure of riding on a speed boat at Lake Pocotopaug in CT with cousin Greg Dainiak and his wonderful family. And during the week Nicholas remained busy going to summer school and getting all of his needed therapies. Nicholas continued to decline slightly each day but we moved forward “making memories” for our family.​

At the end of July, Nicholas precipitously lost his ability to chew his food. It was very stressful for me as I struggled to find ways to keep Nicholas nourished. I learned how to puree any and all his favorite foods and fill 60cc syringes which were used to feed him. He did not lose his ability to swallow and I could tell my boy was hungry. Taking up to 2 hrs at each meal to feed him was stressful and tiring on both of us. Over 4 weeks he lost 7 pounds and I knew the decision to get a mic-key button (feeding tube) was the right one, even though it broke my heart. He had surgery at the end of August and had no complications. After 3 weeks had had gained back weight, over all appeared stronger, happier and returned to eating food by mouth. He tires easily eating so we continue to still supplement his food intake with formula fed overnight. No longer is a battle to get his meds and fluids into him, and the tube is especially helpful during seizure days.

This fall Nicholas returned to a half day of school with his friends and started 3rd grade. He seemed to enjoy being back into the routine of going to school every day and be surrounded with his classmates. He continued to receive most of his therapies at school and a few after school as well. He works so hard but also tires easily.

On October 15th we had our 3rd annual Halloween outdoor Movie night Fundraiser for OPTN. It was a big success this year raising roughly $4,500 with about 400 people attending our event. We had Wally from the Boston Red Sox, St. Anselm Dance Team teach the monster mash, The band Riveted Fate contributed to the music, bouncy houses, children games, a fancy bake sale, sponsors were Carrabba’s Italian Grill and the Meat House. This is a fun event for our family to put together as a tribute to Nicholas (who loves movies) and for the community who seems to love to keep on coming to these events. We hope that everyone enjoys them as much as we do. Thank you to our 65 volunteers to help us put this event together. We could not have done it without you! 

Nicholas had a MRI in October at MGH the results showed some increase activity in the area of the brain that received treatment during surgery last year. No one is sure what this means, but we remain hopeful that the findings can help us better understand this disease and be one of the steps that leads to a cure to all the children to come with Batten disease.
In November we went rode the Polar Express train to the North Pole in North Conway in NH for fourth time with family. This experience is great for Nicholas as he remembers doing it the previous years and it helps him experience the wonder of being a child. There are many great memories we have every year here and we can look back each year and see how Nicholas has changed, but also how we have all grown from our experiences. We will continue to go as long as Nicholas is able.
We continue to “make memories” in December and getting ready for Christmas once again. I reflect back to this year on Nicholas. As I decorated the tree this year with William we pulled out each ornament and talked about who gave it to us, or where we got it (on one of our adventures) and then I pulled out the yearly picture ornaments I have of the boys. It is hard not to feel that lump in my throat and tears wet my eyes as I can see how much he has declined since last year. My handsome Nicholas who was once as strong and witty as a 4 year old and ran circles around me is now 8 and can no longer walk and talk. I now hold onto his hand, his smiles and snuggles we have together and know he is still my boy. I am not ready to let him go but I know in my heart it will soon be his time to fly with the angels. Some say it is a myth to believe in angels. I do and hold onto the feeling that I am the lucky one to be blessed to live take care of one.

I continue to “make memories” with support from my best friend and husband, my family, our friends, Nicholas’s nurses, therapists, our community and even strangers approach me about Nicholas and our foundation. I continue to feel lucky to have been given this journey with Nicholas as my son. I am lucky to have friends who love my son as much as I do. I am proud people want to know who he is and want to help us work toward a cure for Batten disease. I am humbled by the endless generosity I have received. I feel I have been given the greatest gift of life: to be given a son who is making a “mark” in the world one step at a time.

God bless all those who continue to support our foundation. We are making great strides toward a cure. OPTN continues to work closely with the BDSRA (national Batten disease organization) and other foundations throughout the country as we help to develop research that will cure this disease. The money we raise goes completely to the effort, as we have no salaries to pay. No child should have to go through this, but we have taken this as our responsibility to make sure the children to come will have a cure as we keep our promise to Nicholas.
Keep your promises and live for today by making memories of yesterday.
Hope the New Year brings happiness in your heart and peace in your soul.
Heather and Chris Dainiak

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