Nicholas is now 9 ½ years old and it is hard to believe that Our Promise To Nicholas Foundation was founded 4 years ago. We sat at our kitchen table with friends and family to discuss how to start a foundation.
Each year this holiday letter gives me time to recall good memories with Nicholas. Last February we took Nicholas skiing at Mt. Sunapee Mountain with the NEHSA program (New England handicap and sports association). After many cancellations due to Nicholas health, he was finally well enough and seizure free to ski. We only made it down the slope a few times but it was worth every minute. Skiing reminds me of my childhood and I hoped to give Nicholas some of the joy it brought to me. I could see from the expression on Nicholas’s face that he loved feeling free and going fast! When I skied as a kid, I felt empowered that I could conquer anything life would throw me, but little did I know that what life had in store.
This year we finally made some home renovations to help accommodate Nicholas as he continues to grow. We moved Nicholas’s bedroom to the first floor and renovated the downstairs bathroom with a full size tub. We painted his room in his favorite colors. We installed a wheel chair lift into our van to give us more freedom to travel with Nicholas. In the spring Nicholas became suddenly very sick, we think with pneumonia. He was started on IV fluids and antibiotics at home. Thanks to the many home visits by his pediatrician and other medical specialists and friends, we were able to avoid going to the hospital. He slowly got better, but did not return to baseline. He was no longer able to eat by mouth, sit up on his own or say the words “mum”. It broke my heart.
In May, Nicholas had his last follow up visit at Cornell for the 2010 Gene Therapy study. He had his final MRI, blood test, lumbar puncture and eye exam. Although I know Nicholas has declined significantly since the brain surgery I am proud we were part of the study. I know it was not a cure, but it still gives us hope for the future. I look at my son as a hero.
Nicholas ended 3rd grade and started summer school. He attended school for 4 hours a day with his nurse but he had to miss many days of school due to seizures or illness. Whether Nicholas was at school or home he had a busy schedule receiving physical therapy, occupational therapy and speech (for communication). On the weekends we went to the beach so he could feel the sand in his toes, smell the ocean and hear the waves. I could feel him relax into my arms as we sat together enjoying our time.
I am thankful that currently Nicholas remains stable. He continues to enjoy listening to shows and loves family members to narrate Disney Movies, music and books. He likes to go swimming on the weekends with his brother or he enjoys family visiting. He can still occasionally express himself with smiles, laughter and giggles but also with sadness or pain. I know Nicholas’s mind is still in that little body trying his best to communicate his needs to us. I know we are doing everything we can to keep Nicholas comfortable. It is hard to watch his angle wings grow as Batten disease slowly takes his life before us. I never want my little boy to leave me but when it is time I know I will have to let him go in peace.
Our Promise to Nicholas Foundation Update:
We had a very successful year for Our Promise To Nicholas Foundation. The Mom’s Club of Bedford NH held their 4th Annual Easter Egg Hunt Fundraiser in March at the NH Sportsplex, they raised $9,500. The next event was the New Morning School held their 2nd Annual Bike a Ton raising $720.00. 4th Annual Fore Nicholas Golf Tournament and Charity dinner held at the Stonebridge Country Club in Goffstown NH held on Saturday June 23 raised $20,000, and the 4th annual Halloween Outdoor Movie Night Fundraiser raised $3000. Lastly Russell’s Garden Center of Wayland MA had their annual fall festival and raised $1000.00 for OPTN.
As you know, the money we raise all goes to research. This year, we have committed to fund research in conjunction with other Batten disease organizations from around the World and with the help of private industry. This year, OPTN is directly funding an international database on the natural history of Batten disease. This database will keep all of the important information on each child with Batten disease in a centralized location, so that it can be utilized by all scientific researchers as they proceed with ever more important clinical studies. This is critical to understanding if new treatments help to alter the disease process, and allows us to understand therefore, what is actually helping our children. Your support of OPTN is directly responsible for this work!
Looking back at 2012 makes me feel hopeful for the future. We have come so far in so many ways, yet we know that there is so much to do. I am thankful for an amazing and supportive husband. A caring and sweet son William, who tells me his dreams are to end Batten disease for kids like Nicholas. I am thankful for our families and their support. I am thankful for Nicholas’s nurses who give me respite and time with William. I am thankful for his therapists who keep Nicholas well. I am thankful for his teachers who read, sing and include him in class with his friends. I am thankful for everyone who loves Nicholas as much as I do. I am thankful for my friends and our community. I am thankful for the many supporters of OPTN that continues to believe in our family and our foundation. You all give us strength each year to continue with our promise to cure children like Nicholas. I really believe one day there will be a cure.
Heather and Chris Dainiak