Rare Disease Report

Batten Disease: The Movie

MAY 27, 2017
James Radke
In June, a movie called “Love, Kennedy” will be released. First in Utah on June 2nd and then nation-wide later in the month.
The film is about a young teenage girl named Kennedy Hansen, a Utah resident, who suddenly learns she has Batten disease. What the producers of the film hope is that audiences will soon learn that the film is less about Kennedy and her rare condition, and more about the positive impact she has on the people around her.
Below is the trailer.

Based on a True Story

Sixteen-year-old Kennedy Ann Hansen died in 2014, just 1 year after being diagnosed with Batten disease. While the lysosomal storage disorder had taken its toll on Kennedy’s body for years, it wasn’t until the last year of her life that significant declines in motor and cognitive abilities were noticeable. And soon they became very noticeable. Confined to a wheelchair and unable to talk, Kennedy was dying.
What inspired the people to make the film however was that the real Kennedy, even when dying, remained a beacon of optimism and hope to all those around her.
When Kennedy could not tell you how she felt, she gave you a hug. That behavior led to the family’s charity group Kennedy’s Hugs.
Kenndy’s H.U.G.S. Foundation (Healing, Uniting, Giving, Sharing) provides financially assistance to other families for medical costs, equipment, living expenses etc, who are facing a terminal illness.
Kennedy also asked her parents to write a book. They did. That book is now a movie.
Below is the official music video by Jenny Oaks Baker for the film.

About Batten Disease

Batten diseases are a group of lysosomal diseases in which substances called lipofuscins abnormally build up in the body’s tissues. Lipofuscins are composed of proteins and fats, and they normally form in the body. In Batten disease, however, the body is unable to properly eliminate excess lipofuscins, leading to abnormal buildup. They accumulate in the brain, eye, muscle, and many other parts of the body.
The most common form of Batten disease is juvenile Batten disease, in which symptoms begin in early childhood. This is traditionally what clinicians meant by the term ‘Batten disease’. However, more recently, many clinicians have also started to use the term Batten disease to describe other related conditions that involve lipofuscin buildup. In these other forms, symptoms may be present at birth, may arise during early infancy, or may not appear not until adulthood.
In April of this year, the FDA approved the first drug, Brineura (cerliponase alfa), for 1 form of Batten disease, late infantile neuronal ceroid lipofuscinosis type 2 (CLN2).

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