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The Best Movies and Shows to Watch for International Batten Disease Awareness Day

Featuring Love, Kennedy and Chicago Med

Philip Palermo

International Batten Disease Awareness Day is June 9th, and it's a chance for those living with the disease and their loved ones to spread the word about an ultrarare and devastating condition. But it's tricky to succinctly encapsulate what is a very complex topic, which is why stories focused on Batten Disease can be so powerful and effective. 

It's near and dear to my heart because my daughter, Amelia, was diagnosed in 2019. There's currently no cure for her particular variant, and children with her type often don't get to celebrate their 10th birthday. So yes, time is of the essence, and finding a cure starts with spreading awareness. For those eager to learn more, I've put together this short list of films and TV shows that incorporate the disease into their storytelling. If this list helps shed more light on this horrific disease, I'll consider that mission accomplished.

First, a quick primer. Batten Disease is essentially a blanket term for a group of rare genetic neurological disorders. There are currently 13 known types, and are often labeled CLN (for ceroid lipofuscinosis, neuronal) followed by a number. Regardless of type, Batten Disease affects the way our cells process waste, leading to a buildup of proteins and fats around nerve cells. As of 2023, only one treatment has officially been approved for use and it only benefits those with the CLN2 variant. Research continues for first-ever treatments for other types as well.

If you've ever seen or read a news report about someone with Batten Disease, you might have heard it described as "childhood dementia." That might not be the most technically sound description, but it does help convey the seriousness of the disease. Amelia was born with CLN1, also known as Infantile Batten Disease because it typically starts affecting children before their second birthday. In Amelia's case, she learned to stand, walk, and utter a few words before Batten Disease started stealing those skills away one by one.

It's often difficult for Batten families to accurately express to friends and family what they're up against — it's a challenge made tougher by the general lack of media that tackles the subject head-on. 

With all that as a preface, let's dive into the list.

Love, Kennedy

Love, Kennedy

Love, Kennedy

This based-on-a-true-story film focuses on Kennedy Hansen (Tatum Chiniquy), who was born with a variant known as Juvenile Batten Disease. As depicted in the movie, Kennedy grew up more or less "normally" until she suddenly started losing abilities — sight, walking, and more — in her teens. The 2017 movie attempts to strike a balance between the somber and the uplifting as Kennedy's family leans on their friends, community, and religion to help maximize the agonizingly short time they have.

Honestly, just writing that about it is difficult enough, so I'll close this entry by saying Love, Kennedy does a good job depicting the life-altering effect of a Batten Disease diagnosis. The initial shock gives way to a plethora of emotions as everyone involved comes to grips with what lies ahead.

The Act (Episode 3: "Two Wolverines")

While Batten Disease as the focal point of a full-length film or TV show is indeed a rarity, it does pop up as a mention from time to time. Case in point: the 2019 true crime miniseries The Act. Based on real events, The Act features Patricia Arquette as Dee Dee Blanchard, a mother accused of abusing and convincing her daughter (played by Joey King) that she suffered from serious illnesses and disabilities.

Batten Disease earns a mention in Episode 3 ("Two Wolverines") when Russ, played by Dean Norris, encounters what he assumes is a dedicated mom who's put her life on hold to care for her ailing daughter.

"I've been where you've been," Russ shares with Dee Dee. "I lost my boy when he was 13. It was Batten Disease. He was in a chair at the end."

It's a quick mention, but Russ' account feels painfully accurate. In our case, Amelia had just learned how to walk before her CLN1 Batten Disease took that ability away.

Chicago Med (Season 8, Episode 12: "We All Know What They Say About Assumptions")

Batten Disease gets another quick mention in the long-running medical drama Chicago Med. In a Season 8 episode, doctors struggle to diagnose a normally energetic and athletic young boy who has suddenly become lethargic and prone to seizures.

And while the fictional character's condition ended up being something else (something easily treatable, I might add), the loss of abilities and the sudden onset of seizures certainly tracks with Batten Disease and it makes sense that doctors would at least consider the possibility.

Extraordinary Measures

I'm stretching a bit here, but bear with me — there's a connection, I promise. Extraordinary Measures features Brendan Fraser as John Crowley, a real-life biotech executive who became deeply involved in medical research after two of his children were diagnosed with a rare condition known as Pompe disease. 

And while the film itself doesn't deal with Batten Disease specifically, it does help highlight how challenging and frustrating living with a rare disease can be. Getting big pharmaceutical companies to pay attention to and actually invest in treatments and cures can be monumentally difficult when relatively few people suffer from a given condition.

Oh, and these days, the real Crowley serves as executive chairman of Amicus Therapeutics, one of a handful of companies actively working on a cure for at least one type of Batten Disease. 

See, I told you there was a connection.

The Disorder Channel

Rounding out this list is The Disorder Channel, a streaming channel dedicated to people living with rare diseases and the challenges they face. The available content, which mostly consists of short films and interviews, changes from time to time, so there's no guarantee you'll come across a Batten Disease-specific video. Still, it's a worthy resource for those looking to share their rare disease experience and it's a welcome platform to help spread awareness of an array of often overlooked conditions.

If this list feels sparsely populated, that's kind of the point. As with many rare conditions, those dealing with Batten Disease can often struggle to find ways to convey their experiences with the outside world. But convey we must — because first-ever treatments and cures won't just magically appear. Awareness must be spread; support must be built; and — crucially — research funding must be secured.

Every day is "awareness day" for Batten families, but International Batten Disease Awareness Day in particular is a chance for us to spread the word and hopefully build toward miracles.

For more information about all forms of Batten Disease, visit the Batten Disease Support and Research Association.