Planning the vacation of a lifetime around Batten disease

I’m planning a trip to Walt Disney World — also known as the most magical place on Earth — for my son. Jack will be 5 years old when we wander the enchanted grounds of Disney’s Magic Kingdom and Epcot parks, and I’ve spent more minutes than I care to admit contemplating the countless choices. And yet, I recognize how lucky I am to be able to ponder such details as character meals and MagicBand colors. Because in the case of my late sister’s first visit to Disney World, our greatest enemy was time.

Taylor was diagnosed with CLN1 disease on July 24, 2006, at age 7. All things considered, it was an early diagnosis — at the time, faltering night vision and trouble with math were the only real warning signs of Batten disease.

But these unhappy harbingers foreshadowed more tragic circumstances. When a doctor told us what Taylor was facing, Mom and Dad made it their mission to get their youngest daughter to the castle — Cinderella’s castle, that is. They wanted their real-life princess to experience the park before Batten disease stole Taylor’s vision and, later, her ability to walk.

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To Make-A-Wish or not to Make-A-Wish

My parents could have called the Make-A-Wish Foundation. While children do not have to be terminally ill to receive a wish, Batten disease put Taylor well within the limits of “really sick.” I know far too much about the far-reaching, tragic impact a serious illness can have on both a patient and their family and friends. I think Make-A-Wish is a wonderful organization that helps make special memories more accessible for the children who most need them.

But from the beginning, Mom made it clear our family would do this trip on our own terms. She and Dad had decided not to burden their youngest child with the grisly details of her disease. They worried that by receiving a wish, especially so early in her journey, Taylor might feel more like a very sick little girl than a Disney princess fanatic on an epic adventure.

So instead of taking an all-expenses-paid trip, Mom and Dad cobbled together their resources — along with help from a big-hearted relative — to string together two fleeting but unforgettable days at Disney World.

It was a protective, proud, and slightly stubborn decision, and I can understand why it wouldn’t be the right approach for everyone.

Finding magic

I’ll always treasure the memories we made with my sister on a shoestring: dining in the Akershus Royal Banquet Hall, where Taylor passed her feathery pen to all of the princesses and filled her autograph book; watching Tinker Bell’s flight and the fireworks’ dying light reflected in the tears pooling in my grandmother’s eyes; riding the Magic Carpets of Aladdin with Taylor, Aladdin, and Jasmine after all of the crowds had cleared out of the park — purely by chance.

Taylor gets an autograph from Princess Jasmine of Disney’s “Aladdin.” (Photo by Laura King Edwards)

I made many mistakes in the 14 years Taylor survived after her Batten disease diagnosis. I was a good big sister, not a perfect one. I doubt I’ll make all the right choices in my quest to maximize the Disney magic for my son this year.

But all of life’s experiences, including a fight against Batten disease, are largely what you make of them. And for a few enchanted days in the most magical place on Earth, Taylor wasn’t a kid with Batten disease. She was just my little sister.

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.