Grief fueling fury: What it means to fight Batten disease like a mother

Motherhood is one of the most common yet profound experiences of human life. It’s the most difficult and best thing I’ve ever done — my 4-year-old son serves as a constant reminder. And yet, for mothers of children battling a rare disease, the journey takes an extraordinary turn.

I lost a sister to CLN1 disease (Batten disease), and while I wouldn’t wish that experience on anyone, I can only imagine our mother’s pain.

Since that sweltering July day when a geneticist diagnosed 7-year-old Taylor with Batten disease, I’ve watched Mom rise above her own cruel circumstance again and again. In recognition of Mother’s Day last Sunday, following are three ways Sharon King faces adversity head-on.

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1. Refusing to take no (cure) for an answer

It’s impossible to know how I would have reacted to such a damning diagnosis, but 17 years later, Mom’s early response to the news of Taylor’s disease — and the utter lack of a single meaningful treatment at the time — is still just as striking. Mere hours after learning Batten disease existed, she’d shifted into resolute determination. I can still see her facial expression caught in the rays of sunlight slanting through the windows of a Charlotte, North Carolina Starbucks. She was devastated, yes, but also furious.

“I’m not letting this disease call the shots,” she said. “I’m going to fight.” And fight she did.

2. Leaving no stone unturned

The uncertainty of the future is perhaps the most upsetting part of an ultra-rare disease. But Mom made sure Taylor had every opportunity to thrive in spite of Batten disease, while she searched high and low for a long-term solution. From orientation and mobility training before my sister lost her vision to physical therapy, off-label drug use, and even an experimental stem cell transplant, Mom threw everything the medical community had to offer at the situation.

Meanwhile, she registered for scientific conferences, printed obscure articles from the internet, and gave local doctors the Batten disease primer they didn’t get in medical school. She gave rousing speeches. Funded junior investigators. Recognized the promise of gene therapy at a time when most of the world was afraid of it. Convinced politicians on both sides of the aisle to establish the nation’s first rare disease advisory council — in a unanimous decision, at a time when they couldn’t seem to agree on anything else.

Through it all, her grief fueled her fury.

3. Appearing brave even when life is terrifying

Make no mistake — when it comes to Batten disease, Mom has always been terrified. Terrified of getting hurt. Terrified of losing Taylor. Terrified of losing the fight.

But Mom has also appeared brave when she needed to, whether convincing donors to throw their hat (and their disposable income) in the ring or willing herself to provide a pillar of strength for Taylor, her daughter, so Taylor could just be a kid. Mom marched headlong into an almost impossible battle — and she kept marching, long after she knew her efforts would have no bearing on the outcome of her daughter’s survival.

She didn’t quit, and she never will.

That’s fighting Batten disease like a mother.

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.