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We Need Your Help

Our five-year-old son Noah is battling Batten Disease, a rare genetic illness that has ruthlessly robbed him of his speech, balance, and mobility. A few months ago, we were devastated to learn that our three-year-old daughter Laine also has Batten Disease. At this time, Batten Disease is always terminal, usually between the ages of 8 and 12.

Fewer than 450 children in the United States have Batten Disease, and as a result it receives very little research attention. The Centers for Disease Control contributed less than $5 million to Batten research in 2008, and only a handful of scientists around the world are focused on potential therapies. Please help us as we fight for a cure for Batten Disease, which first takes away childhood…and then takes away our children.

Changing our Dreams

As a baby, Noah hit all of his developmental milestones on time. He was a rosy-cheeked, busy little boy who loved baseball and trains. Then suddenly it all began to change. Within one year of his first symptoms, Noah could no longer throw a ball. He now suffers intermittent seizures, and requires assistance to walk, eat, and communicate.

Exactly five months after Noah's diagnosis, we learned that little Lainey also has Batten Disease. Blessedly, her twin sister Emily has been spared. Laine has had a few seizures, but the disease has not yet impacted her busy little days full of dress-up, coloring, and Dora the Explorer. As we watched the twins skip into preschool the morning after Laine's diagnosis, we could barely hold back our tears as we thought about what the coming months and years would hold for our family.

The Light in Their Eyes

We still have many dreams for our children, but they are not what we originally planned. We dream of happy memories together, we dream of a delay in Noah and Laine's symptoms, and we dream of a cure that can save our darling babies. We are working tirelessly to explore potential treatments and to raise funds and awareness about this little-known, devastating disease.

Although he can no longer walk or talk, Noah still lights up when he sees his sisters. And everyone around him lights up when he is near. It is Noah's Hope, and ours, that together we can find an answer that will save Noah, Laine, and the other children who are courageously fighting Batten Disease.

Become Part of Noah's Hope

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 the benefit of both Noah and Laine, and for Emily who will watch as her siblings travel on this difficult journey.

This website will show you how to support Noah's Hope through fundraising, events, and donations. Explore the site to learn more about Noah and Laine's stories, and about Batten Disease. Please become part of Noah's Hope, and encourage others to get involved. We believe that a cure will soon be available, and we will absolutely fight until it is. Together we can make a difference.

Every childhood disease deserves a cure.

-- Jennifer (Noah and Laine's mom) and Tracy VanHoutan (Noah and Laine's dad and BDSRA board member)

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