Li-Fraumeni in the movies

by Andi Last  –  Li-Fraumeni Syndrome (LFS) has made it to the movies. Back in 2014, LFS was used in a plot line on the TV show, Grey’s Anatomy. Ann Ramer recapped the episode here. For a condition as rare as ours, this was a big deal in the LFS community.

On October 27, 2017, Let There Be Light was released in movie theaters across the country, bringing LFS to the general public once again. (Thank you Susan Frary for letting us know!)

Fox’s Sean Hannity is executive producer of this faith-based film that stars Kevin Sorbo (Hercules, Andromeda) in his directorial debut, and real-life wife Sam Sorbo. Sam Sorbo also co-wrote the film with Dan Gordon, screenwriter on movies like Passenger 57 and TV shows like Highway To Heaven. SPOILER ALERT: If you haven’t seen the film and are wanting to, you may want stop here, there are some details mentioned below about the plot.

Let There Be Light movie posterDr. Sol Harkens (Kevin Sorbo) is a celebrity author and the world’s most famous atheist as a result of the death of his 8 year old son, Davey, from a brain tumor. That genetics could be involved is teased early in the film in Harkens’ debate with a Christian cleric. Harkens says, “I’m willing to say my son’s death was just plain bad luck, a quirk of genetics, a bad roll of the cosmic dice, or maybe some corporate villain who poisoned the water.” He says if he were a praying man, he’d pray to see his son one more time, but that would mean praying to the very so-called God that killed him.

Harkens is estranged from his Christian wife, Katie (Sam Sorbo) and their remaining two sons (played by the couple’s real-life sons). With his life spiraling out of control, Harkens drives drunk, has a car accident, and is clinically dead for 4 minutes. In that time he indeed sees Davey again. Davey tells his father it isn’t his time, and “Let There Be Light.” Harkens returns to consciousness a changed man. The world’s biggest atheist finds God. The Harkens make plans to remarry – and to fulfill Davey’s request by creating a LTBL phone app to send light across the world to Heaven on Christmas Eve, with Sean Hannity as their media partner. The family seems to be back on their way to happily ever after as Christmas nears – until tragedy strikes again.

Katie has a seizure just like Davey’s. In the hospital the next morning, a doctor (played by country star Travis Tritt) comes to talk to the couple. He says, “We’ve had a chance to study the MRI and the CT scan, and we’ve gotten a pretty detailed look at your blood work.” Sol asks for the doctor’s specialty. Upon learning that the doctor is an oncologist, the Harkens understandably freak out. Katie cries, “It was me, wasn’t it? I gave it to him, didn’t I, Doctor? I gave our son cancer.” The oncologist tells her no. He says, “the blood work indicates that you have Li-Fraumeni Syndrome. People with Li-Fraumeni Syndrome are susceptible to various types of cancer, including brain tumors.” They discuss her prognosis and options, then the family goes on to make the most of the time they have left together.

In one scene, Katie tells her boys that whatever happens to her is God’s will, that she doesn’t believe in death, that it’s like she’ll just be in the next room. Katie dies in Sol’s arms on Christmas Eve as the world shines their LTBL lights to heaven and her family sings “Silent Night.”

Of course, Let There Be Light isn’t at all intended to be a primer on Li-Fraumeni Syndrome. Like with the episode of Grey’s Anatomy, there were inaccuracies due to time constraints. That LFS is inherited is implied when Katie dramatically asks if she gave her son cancer, but that the oncologist vehemently tells her no confuses the fact that LFS is indeed inherited at least 80% of the time. Genetic testing was never mentioned. Genetic test results aren’t available for next-day delivery – at least not yet. Maybe some day. Mentioning that the other two sons have a 50/50 chance of also having LFS and asking about family history would’ve been a responsible way to educate about the condition, perhaps even prompting audience members to wonder about their own family history, do more research and consider genetic testing themselves. But the goal of this movie is simply to encourage faith in difficult times. Opening a whole can of realism worms that prevent the story from wrapping up with a bittersweet Christmas Eve bow wouldn’t help.

Li-Fraumeni Syndrome was simply  the tragic vehicle chosen to convey Let There Be Light‘s message of hope. Katie’s tragedy could’ve been completely unrelated to her son’s, and the story would’ve still held together. It makes me wonder if there is a true LFS story in the lives of one of the screenwriters. If so, it’s a story I would like to hear. In the meantime, I hope that Let There Be Light might turn on a light of recognition and awareness next time those movie goers hear mention of Li-Fraumeni Syndrome.

UPDATE: The day after this blog post was released, I received a message from Dan Gordon, the co-screenwriter and producer for Let There Be Light, and we now have our answer: Dan’s brother had LFS. Dan was kind enough to grant me an interview for the Learning Li-Fraumeni Syndrome podcast. Watch it here. I’m so grateful to Dan Gordon for sharing his very personal story, and helping us bring awareness to LFS!

Read more real stories of hope from real Li-Fraumeni Syndrome families on this blog, and on our Facebook page.

#LetThereBeLight #ShareTheLight


Strings, Smiles and the Whispering Voice. Lisanne and Elise’s Story

Lisanne’s grandfather, three of her aunts, an uncle and a nephew – all of them died from cancer. Her daughter got a brain tumour at the age of 1.5 years. They are a Li-Fraumeni Syndrome family. They are living LFS.

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This month marks the 5 year anniversary since Lisanne’s daughter was diagnosed with cancer.

”I remember when me and my husband sat on the big hill next to Sahlgrenska while our precious daughter was undergoing brain surgery. We promised each other to fight this together, to stay together no matter what,” Lisanne says.

The whispering voice has helped Lisanne through the toughest challenges in her life.

“And that’s why I want to tell the story about our family curse. I want to break the taboo regarding cancer and other hard things in life. To make people see how you can listen to the little voice in your head saying; I will try again tomorrow.”

”I will not get a new life, I have to play the cards I have gotten, and make it as good as possible,” she continues.

”Supersnöret”

When Lisanne’s daughter got brain cancer she had to go through both surgery and a massive amount of chemotherapy.

”I wanted to make her journey a little bit easier. I found out about ”Supersnöret”, a string with different beads for different treatments, where the children make there own ”Superstring”.IMG_8082

They had it in Holland, and I thought to myself; This would be perfect for my daughter, and I want it for all the kids in Sweden fighting cancer,” Lisanne says with a smile.

Today most hospitals in Sweden are ”on board” and the ”Supersnöret” is a well functioning therapy, both during treatment, but also after finished treatment, to help showing friends and family the journey of fighting cancer. Find out more about the program below and HERE.

In 2014 Lisanne shared her story for a TEDX talk. About living with cancer. About handing down cancer from generation to generation. About marking the journey with beads. About Living with Li-Fraumeni Syndrome and listening to your inner voice

English Translation from Supersnoret.
SUPERBEADS World’s most important beads

The treatment of children´s cancer is often long and hard. To support and encourage children and young people on this difficult journey, Barncancerfonden Östra presents “Superbeads”

Children receive a superbead for every x-ray, blood test, hospital visit, injections etc. Each treatment has its own specific colorful bead. These Superbeads are added on a string and together they tell the unique story of the childs treatment path.

A few days after diagnose each child receives a waxed string with an anchor and letter beads forming his or her first name. Following this the patients receive new beads for each treatment so they can record, tell and own their story.

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Superbeads purpose
Although the Superbeads can be something children look forward to during hard times it is much more than just a fun collection of beads.

The personal string of beads create a colorful picture of a difficult period that is often abstract and therefore difficult to put into words for the patients. Superbeads give children a better understanding of each stage of their treatment; they get a concrete overview of what has happened. Each patient can fully verbalize his or her treatment/progress by following the story the beads create – every moment in chronological order from diagnosis to hospital visits, x-ray, stem cell harvesting, etc., etc.

If the child is very young during treatment the Superbeads can show them what has happened when they get older. When treatment is over the children and their families have the Superbeads as a colourful informative string of beads to keep and cherish.

How does it work?

All children and young people aged 0-18 that are treated can get Superbeads for free. Staff helps patients and caregivers to learn which bead represents which treatment. After this the patients or their caregivers should ask for the beads they have earned. When treatment is completed the Superbeads are finished with a special bead; no beads are handed out for follow-up consultations.

There are similar programs in different hospitals. Beads of Courage is one program in the US.