Our Promise to Nicholas: The Battle with Batten

Submission by "Our Promise to Nicholas Foundation"

The Battle with Batten; Realizing the Promise

As a young child Nicholas Dainiak of Bedford, N.H., had exuberance and energy, curiosity and humor, he was loved and gave that love to others. However, at age 5 he was diagnosed with a rare and fatal neurodegenerative disease that affects the brain and central nervous system, called Batten Disease.

With an inconceivable diagnosis and family desperate for action, in 2009, the Our Promise to Nicholas Foundation (OPTN) was created by his parents, Chris and Heather Dainiak. OPTN’s mission is to raise funds and mold partnerships to promote awareness, provide education and fund the development of research to fight Batten Disease.

Sorrowfully, Nicholas, age 11, lost his battle with Batten on his birthday, May 9th, 2014. Nicholas showed all who touched him how to live. He could not see, but he gave others a truly beautiful picture of what a meaningful life could be. His body was still, but he raised a community to a grand movement. He could not speak, but his voice soared with a message of hope and healing. His spirit about life and love gave his family and friends the determination and enthusiasm to combat such a debilitating disease.

By creating OPTN, the Dainiak’s found meaning in their child’s suffering. "We have been taught so much by our son Nicholas, he showed us what was important in life and how to live as full of life as possible," said his father, Chris.

In turn, Chris and Heather embody humility and compassion for others and have shown a remarkable ability to see beyond their family’s issues. They radiate positive energy and the imprint of their lives has impacted a community in ways that cannot be described. Their passion and extraordinary accomplishments for raising awareness and research money for OPTN has only increased through the last 6 years, and is now stronger than ever. 

Hundreds of volunteers have organized events including, fundraisers, walkathons, golf tournaments, parties, and activities to meet the challenge and touched the lives of thousands. 

Additionally, an international conference held in March 2014, brought scientists and other medical personnel together from around the world, organized and financially supported by the OPTN in collaboration with other Batten’s Disease Non-profits. The ‘Promise’ is being realized, but there is more to be done.
In Nicholas’ short 11 years he has given us longevity of hope that one day there will be a cure for Batten Disease. His life changed the lives of many and the Our Promise to Nicholas Foundation will passionately continue to strive in their mission of promoting awareness, funding education and research to one day find a cure for Batten Disease. 

"Nicholas’ life was a gift, and we are glad that gift was given to us. We have the opportunity to do something special," said Chris. In keeping their Promise to Nicholas, OPTN will be there for others, battling Batten, with Nicholas’ spirit teaching the community about love and grace, inspiring the fortitude of optimism and courage; this is a life remembered. 

For more information on Nicholas’ journey, OPTN-funded research initiatives, Batten Disease, upcoming events/fundraisers or to make a direct donation, visit the OPTN Foundation website at 
www.ourpromisetonicholas.com.