We Need Your Help
Our son Noah lost his fight against LINCL-Batten disease March 26, 2016, just a few weeks shy of his 12th birthday. Our ten-year-old daughter, Laine, continues her fight against this rare genetic illness that has ruthlessly robbed her of her speech, balance, and mobility. At this time, LINCL-Batten disease is always terminal, usually between the ages of eight and 12.
We always thought our little “birds” would fly, but now we know that they will never leave our nest in Chicago. Laine loses more of herself with every passing month. Yet even as she slowly slips away, we are intensifying our efforts to battle LINCL-Batten disease. Our other daughter, Laine’s twin sister Emily, blessedly does not have the disease.
Forging Our Path
Fewer than 450 children in the United States have LINCL-Batten disease, so it receives very little research attention. The U.S. government contributed less than $700,000 to LINCL-Batten disease research in a recent year, and only a handful of scientists around the world are focused on potential therapies.We are forging our own path. Since Noah was diagnosed we have raised more than $250,000, collaborated to fund six research studies around the world, and lobbied Congress. We have written, spoken, and listened to thousands of people. But it is not enough. We need your help.
Jump, Giggle, and Run
Noah and Laine began their lives as healthy, energetic kids who loved to jump, giggle, and run. They had endless things to say and were always looking for their next big adventures. They appeared perfectly healthy until they turned three, when they began suffering seizures and gradually lost motor skills.
Noah had a feeding tube. He could neither walk, control his body, nor talk. Laine communicates and eats only with extensive assistance. She was so frustrated in the summer of 2011 when she lost her ability to walk, mostly because she could no longer keep up with her twin sister Emily. Meanwhile Emily continues to astonish us by doing new things every day, reminding us how far from “normal” her siblings have come.
A Blessed Struggle
Life is a struggle for all of us. But we try to remember the simple blessings that come with the great loss we face. Noah and Laine will be forever simple and sweet. They will never see the complications of life. They will never have their hearts broken. They will never see their own kids get sick. And they are, and always will be, an inspiration for the countless volunteers who are working with us to fight LINCL-Batten disease.
We created the Noah’s Hope Fund to support research, raise funds, and inform the community before we knew that Laine would also fight this terrible disease. Now we pour ourselves into Noah’s Hope for Noah and Laine, for our extended Batten family around the world, and for Emily who will watch as her siblings travel on this difficult journey.
Please Join Us
This website will show you how to support Noah’s Hope. Explore the site to learn more about Noah and Laine's stories, and about LINCL-Batten disease. Take action and donate through the links at the top of the page, and see our upcoming events on the left of the page. Please become part of Noah’s Hope, and encourage others to get involved. We will fight tirelessly until a cure is found. Together we can make a difference for the future.
Every childhood disease deserves a cure.
--Jennifer and Tracy VanHoutan (Parents of Noah, Laine, and Emily)