December 2014

December 18th, 2014

familypicture2104Seasons Greetings! This season is about giving thanks for the miracles in our lives.  In 2009, Our Promise to Nicholas Foundation (OPTN) was created with passion, promise and purpose. We vowed that in the future, no family would have to endure the loss of a child, like us, to the debilitating brain disease called Batten.  The truth is, during our darkest moments this year the real miracle has been the kindness and generosity we have received, and the amazing resiliency of human spirit we experienced through your support.  It is because of you that we are passionate about keeping that promise with renewed hope and energy. Your continued generosity is so important to provide the needed support to thousands of people like us fighting Batten disease. Last year your generous contributions raised over $20,000. This allowed OPTN to organize and host our second international scientific conference. Held in Bethesda, MD it was enthusiastically received by all involved.  Grant proposals have been written, and creative thought provoking work has been created. It is evident that progress is being made and we know that as far as we have come, there are still many miles to go. We can see the changes in the research community’s interest in fighting this disease. This is clearly an exciting time to be chasing a cure. We know of course that you are generous and kind-hearted toward OPTN throughout the year, but in this special season we are faced with the challenge of so many lives being lost.  On his 11th birthday, May 9th, Nicholas lost his fight with Batten.  Along with us, over 50 families across the country lost their child to Batten disease this year alone.  More children are likely to pass away in the coming year, and still more families are just learning of this cruel diagnosis. Our Promise To Nicholas Foundation money goes to: □ Research Grant support:  We are currently reviewing grant proposals which will support the latest and best available research toward curing Batten disease.  Each award recipient has been promised an award of $100,000 per year in support for up to three years.  It’s simple: with your support, more research can be done. □ Nursing Coverage – The national Batten disease organization (BDSRA) hosts an Annual Batten disease family conference in July, where families with their affected children come to receive support and information. During the five day conference each child with Batten needs continual expert medical attention. Nicholas’ life changed the lives of so many and your efforts will continue to change the lives of many more. His life taught us love, compassion and generosity. He inspired a community to come together in the most meaningful way. This season we give thanks. Nicholas miss and we love you! Warm wishes, Chris, Heather and William Dainiak Our last family photo together, March 2014.

The following is a list of our up-coming events and fundraisers for 2015.

·         7th Annual Easter Egg Hunt – April 4th  the Sportsplex in Bedford, NH

·         1st Annual Nicholas Road Race – May 2015 in Bedford, NH more info to come

·         7th Annual FORE Nicholas Golf Tournament – Saturday June 20th Stonebridge Country Club in Goffstown , NH

·         3rd Annual John Tanner Memorial Road Race – October 2015 in Wayland, MA

·         ‘Quizine’ for a Promise – November 2015, location TBD

Personal update December 2014 I want to thank each and every one of you for your support for the past 7 years while Nicholas was sick. I made a lot of new friends in the process and kept many of my old dear friends. We miss Nicholas so much. My grieving began 7 377years ago when he was diagnosed with batten disease at children’s hospital in Boston. I knew there would be a day that my baby would leave me.  I could not bear pain to think about it until he was incredibly sick in May and I knew at that moment I had to let him go in peace. In the past months I have reflected back on 11 years of my life taking care of Nicholas. It was not only physically exhausting but also mentally challenging and stressful.  There was never a time that I threw up my hands and walked away but I have shed many tears over the years.  Nicholas depended and counted on me as his mother to be strong for him as his health declined rapidly. I just had to reach deep down into my soul and find a way to give every last amount of energy that was inside me.   I know I was given a child from god and he was a gift. What made me strong is my family and friends who surrounded us from the minute we found out Nicholas was so ill. Not only did you wrap your arms around my family. You believed that we could make a difference at that time as we grasped for anything to give us a glimpse of hope.  Although Nicholas is no longer by our side, we still hold onto his strong sprit he left and the promise we made to him at the beginning of our journey. Because of you, our foundation has been very active for 7 years and we will work for another seventy-seven more! I know in my heart that I provided Nicholas with the best possible love and care in his short life.  I will forever be grateful that I am his mom. He taught me that life is precious. So- what have we been doing? After Nicholas passed away we decided we needed to visit places that are so near and dear to our hearts.   First stop was Santa’s Village. Riding every ride in the park brought back a flood of good memories. I could hear Nicholas saying “WEEEEEE” in my ears.  Our next stop was Joe’s Pond Vermont. Starting this journey without Nicholas is painful at times as Chris and I glance at each other we know without words what the other is feeling. Over the summer William returned to Melody Pines day camp which he had gone to in previous years. He started 2nd grade this fall and played flag football. He just started on the swim team, Children’s church chorus and CCD.   William and Chris have taken on a hobby of Lionel trains. They have made many trips to the train store in Amherst and together the boys are working on designing another train table in a new spot in the basement. I jumped back into working for the foundation with the guidance of OPTN’s new developmental director. I had also stated working for a friends’ whole sale food company baking lots and lots of breads. I renewed my NH state dietitian license and am in the process of updating my resume which has not been done for 8 years!  This summer I also attended the BDSRA (Batten Disease Support and Research Association) meeting in Ohio to help take care of the batten kids while their families attended the conference. It was very healing to be with these children and their families. I know it is where I need to be. When I am not busy I have found the most peace by doing endless laps swimming at the health club pool to clear my mind. Chris continues to swim 5 days a week.  William and I have watched him swam in a few masters swim meets. He has become very strong and fast for an old guy swimming with these young college graduates. His GI practice remains very busy and seems to not slow down for a minute. It was hard to get used to not having nurses and therapists in my house.  The quiet and stillness of my house took time to get used to.  I know it is crazy but I can still hear Nicholas’s voice from time to time. Honestly if my mind is playing tricks on me it does feel comforting to know his spirit is with me. The three of us have not forgot about Nicholas for a minute. We talk about him daily and watch our endless funny videos of our spirited Nicholas.  It was peace of mind to be able to donate all of Nicholas equipment and toys to families who also have children with special needs.  I found myself spending a lot of time in Nicholas’s room. I have turned his room into a shrine of Nicholas pictures and also brought all my fundraising materials into his room. We have a busy 2015 Our Promise To Nicholas Foundation planned. Are we okay? Yes!  We are okay. We all take one day at a time. Knowing that Nicholas remains close to our hearts as he changed our lives forever to be better. Love, Peace and Joy. Hugs to your family from ours. We hope you all Merry Christmas.   Love, Heather Dainiak IMG_1499 (2)

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