Our Story

Our youngest son, Jasper does everything with a smile on his face and, in general, is one of the happiest kids! Like many little boys, Jasper’s favorite things in the world were running and kicking a ball around with his big brother, Jeroen and playing with his Thomas trains. Unlike other young boys, in March of 2009, Jasper was diagnosed with Late Infantile Neuronal Ceroid Lipofuscinosis (LINCL), often referred to as Batten Disease. It is a cruel and rare childhood disorder for which there is currently no cure. Over time, children affected by Batten disease/LINCL suffer from seizures, mental impairment and progressive loss of sight and motor skills. Specifically, children become blind, bedridden, have to be tube-fed and are unable to communicate. At this point in time, Batten/LINCL is always fatal and ends in death usually between the ages of 8 and 12.

Today, Jasper experiences seizures, his vision has deteriorated significantly, he is no longer able to walk by himself and his vocabulary is small. Yet, remarkably, despite all of his challenges, he remains the happiest of kids–always enjoying the things he still can do, and flashing the biggest smiles to the people he loves. He inspires us every day with his enthusiasm–still loving his school time at the Chicago Lighthouse. And he has inspired school children across Chicago, NY and the Netherlands to help fight for his life.

The mission of Jasper Against Batten is to approach the challenges of Jasper’s disease with the same spirit that our young son approaches his world–with enthusiasm and commitment. Though there is currently no cure, with your donations, we are funding the most promising research and working to quickly develop new treatments to stabilize and eventually reverse this deadly disease. The gene connected to Batten/LINCL as well as the specific enzyme that is missing for these children have already been identified. We will cure this disease. We need to do it now.

Jasper Against Batten has teamed with Partnership for Cures, a non-profit foundation dedicated to finding treatments for patients with catastrophic diseases, to achieve this goal, so that children like Jasper do not have to die needlessly. We hope that our story and our efforts will achieve this purpose. Please join us in the fight to keep our little boys and girls alive and smiling. Thank you.

-Pip and Bou Duinstra

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