It takes years for a diagnosis: Juvenile Batten Disease, an extremely rare, terrible, and terminal prognosis with no known cure. In the movie, and in real life, Kennedy lives an excruciatingly short 16 years, leaving behind a legacy of love and friendship.
Not long after the movie’s premiere, another Utah family would connect with the Hansen family story in ways they never could have imagined.
It started when 6-year-old Davis Turner began to lose his vision. At that point, all of the Turner kids had been born, and mom Tina was busy juggling life with four under the age of six.
Unlike his siblings who were typically developing, Davis was experiencing some other challenges, and not long after his vision began deteriorating, he was diagnosed with Stargardt disease, an inherited disorder that causes progressive vision loss.
Davis was blind within the year.
Soon, all four Turner children were blind
By the time the youngest child, Clint, turned five, all four Turner kids were blind.
The family was shocked, heartbroken, and completely bewildered by what was happening. As they tried to adjust to this new normal of life with visual impairment, more abnormalities appeared. In school, Davis and Ashlyn started to decline cognitively.
Next was loss of speech, loss of motor skills, loss of independence, and seizures. This pattern repeated with the youngest two, Brock and Clint, as well.
Of all the siblings, Ashlyn has been the most advanced with her symptoms, and by the time she was 16, her regressions were shocking - her speech was reduced to just five words.
Ironically, soon after, a family friend sent Tina an article about another family with a rare disease that seemed similar to what they were experiencing.
Because her symptoms seemed to progress more rapidly, Tina took Ashlyn to the geneticist first. The results took six months to come back and it confirmed what Tina already knew in her heart to be true.
Ashlyn was diagnosed with Juvenile Batten Disease, the same rare, terminal condition that Kennedy Hansen battled.
Next was Clint.
(Unbelievably, Tina’s brother would also have two daughters diagnosed with Juvenile Batten Disease, too.)
The Turner children didn’t have Stargardts Disease after all. But now, they face a different future. Markers of Batten Disease include vision loss around the age of 5, followed by seizures, cognitive decline, personality changes, loss of motor skills, dementia, and finally - tragically - death between the ages of 15-30 years old.
One year, Tina was having an especially hard time finding the energy or will to decorate for the holidays. (“I was feeling a bit like, what’s the point?”) But Davis, Ashlyn, Brock, and Clint kept asking her to do it, and once everything was up, they went around the room, feeling the decorations on the walls and looking so excited and happy about it all.
Davis is now 20, Ashlyn is 18, Brock is 15 and Clint is 13.
The last three years since their diagnosis have been filled with heartbreakingly difficult moments and also days filled with so much happiness, it was almost unbearable.
It’s still tough to think of all they’ve been through just while writing this story. But that’s the thing about the Turner family. When anyone else would shut down, or close themselves off, or turn inward, they look for the good.
For a family used to navigating the dark, they always seem to find the light.
Chive Charities and STRATACACHE Combine Forces Once Again
Chive Charities initially raised $68,546 to fund a 2019 Ford Transit Passenger High Roof Van, capable of transporting the Turner Family.
In addition to transportation, they also needed a wheelchair-acccessible bathroom. That’s where STRATACACHE came in. We stepped up and funded a complete bathroom remodel.
As always, it was a proud moment for the STRATACACHE Family to take part in such a good cause. We thank Chive Charities for helping us play our part.