How I Reclaim Anniversary Days From Batten Disease

My sister, Taylor, always loved All Hallows’ Eve. But the beginnings of blindness hampered Halloween fun almost a year before we knew she had CLN1 disease, or Batten disease.

I remember that crisp, cool autumn night in 2005 almost like yesterday: Taylor often stumbled while trick-or-treating and occasionally struggled to locate doorbells. Her struggles were as puzzling as they were noticeable. Given a million chances to piece together the clues, we still wouldn’t have guessed Taylor had a rare, fatal illness.

Halloween always looked different after that, but it wasn’t the only holiday Batten disease changed. Easter egg hunts became cruel and unusual for a little girl who’d lost her vision. Independence Day still delivered fireworks, but only by sound. Thanksgiving feasts didn’t feel the same after Taylor could no longer swallow food. Christmas brought joy, though “Silent Night” had a different ring after my sister lost her speech.

Batten disease claimed ordinary days, too. July 24 became Diagnosis Day; each Aug. 19 marks another birthday she didn’t get to celebrate; Sept. 26, once simply the fifth day of fall, will now forever be The Day My Sister Died.

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As any affected family knows, Batten disease is a bandit. If you’re not careful and fight this beast long enough, you’ll surrender scads of days to sad memories and anniversaries you don’t care to celebrate.

Thankfully, Taylor taught me enough to know better.

So instead of letting Batten beat me again and again, I dare it to ruin my days. Halloween is an excuse to pull out the pumpkin I won for outrunning the competition in a 5K race — while wearing Taylor’s purple witch costume. Easter is a holy reminder that my sister is in heaven. The Fourth of July is an excuse to light purple sparklers in her memory. Thanksgiving is about spending time with others who loved Taylor and giving thanks for what we still have. During the Christmas season, we play carols she loved. Each July 24, I reaffirm my promise to keep fighting Batten disease until families like ours no longer have to hear the words, “No cure.”

Every Aug. 19, I light a candle for the birthday girl. And on Sept. 26, I hold her in my heart perhaps more tightly than any other day of the year. I look toward the sky. I smile. And I remember.

My sister defied Batten disease from start to finish. No matter how hard life became, she never dropped out of the race. Now, more than four years after her death, I’m still missing Taylor. But my sister didn’t give her illness the satisfaction of stealing a single moment, let alone special days.

Neither will I.

Note: Batten Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Batten Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Batten disease.