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“A lot of things have changed over the years, and sometimes I get upset looking at old videos of things Nicole used to do but now she can’t”

10-year-old Louis is brother to Nicole, 9, and Jessica, 5, who both have CLN2 Batten disease. In this video he explains how it feels to see his sisters having seizures and his eldest sister losing her abilities. 

Two weeks after Louis’ sixth birthday, we were given Nicole’s diagnosis of CLN2 Batten disease. Then three months later, we were told Jessica had it too. 

Louis has lived with Batten disease and watched how it has affected his sisters and our family life, for nearly five years. His understanding and acceptance has changed over the years and his questions about his sisters have changed. When Louis was younger he would ask direct questions like, “Is Nicole going to die?” and he would draw a Star Wars scene with fighter jets blasting at the Batten disease to kill it. He would worry that Jessica was going to lose her abilities like Nicole and he wouldn’t have anyone to play with. 

At the age of ten he is a wise and sensitive soul. He is more aware of the cruelty of Batten disease and has been upset at how unfair it is for Nicole that she can no longer run around with him and Jessica. It is heart-breaking trying to explain and make him feel better, but the advice we give is not to dwell on what Nicole has lost but to focus on what she is still able to do, and to know that she knows she is loved. 

We adore Louis and couldn’t be any prouder of him and how he has had to adapt to life with this illness; leaving him every fortnight for hospital, missing him but knowing we have to go. His little sisters absolutely adore him too. He is the best brother in the world to Nicole and Jessica. Louis wanted to contribute to Batten disease awareness day, so here is his video on what it is like to have two sisters with Batten disease. 

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