Leia kissing Lucie's newborn head.

Story

Stories like this start with a symptom. An odd birthmark. Weak muscles. A misshapen bone. Next the pained look of a worried doctor trying not to look worried. Then a blood test and a gut punch: your baby has a chromosomal disorder.

Your life will never be the same. This is true for any new parent, but it’s especially true for you.

You will no longer daydream about your child graduating atop their class — you will wonder if they will talk.

You won’t carry them for a year and watch them take their first step — you will carry them... maybe forever?

You will wonder obsessively — will they ever have a job, ever live on their own, ever make a true friend?

There will be much dread, much heartache, of course, but, surprisingly, weirdly, powerfully — and especially as time goes by — much joy, too.

Life is Strange, Leia Lu is a long-term documentary feature project offering an unprecedented look inside a young family navigating the hardships and perplexities of a medical catastrophe, along with the profound and unexpected gifts of that journey. It will follow the Reynoldses for more than a decade as they persevere and ultimately carve out a happy and hopeful path for themselves and their daughter, Leia.

Stories like this start with a symptom. An odd birthmark. Weak muscles. A misshapen bone. Next the pained look of a worried doctor trying not to look worried. Then a blood test and a gut punch: your baby has a chromosomal disorder.

Your life will never be the same. This is true for any new parent, but it’s especially true for you.

You will no longer daydream about your child graduating atop their class — you will wonder if they will talk.

You won’t carry them for a year and watch them take their first step — you will carry them... maybe forever?

You will wonder obsessively — will they ever have a job, ever live on their own, ever make a true friend?

There will be much dread, much heartache, of course, but, surprisingly, weirdly, powerfully — and especially as time goes by — much joy, too.

Life is Strange, Leia Lu is a long-term documentary feature project offering an unprecedented look inside a young family navigating the hardships and perplexities of a medical catastrophe, along with the profound and unexpected gifts of that journey. It will follow the Reynoldses for more than a decade as they persevere and ultimately carve out a happy and hopeful path for themselves and their daughter, Leia.

Read More
Young Leia being pushed by Lucie in a cart.

“It’s wondrous to imagine how we all went from a single fertilized cell and became trillions of cells functioning in relatively perfect harmony...
but sometimes it doesn't go perfectly.

Leia as an toddler smiling. A field of wildflowers are behind her.
Leia pressed up against Lucie's pregnant stomach on Christmas.

Based on hundreds of hours of archival footage shot by Leia’s father Matt, the film begins with the day Leia was born (in 2014). She was too weak to cry and too weak to breathe on her own. She was rushed to intensive care, where Matt stayed with her for 30 hours, afraid to leave even to go to the bathroom. “I thought she might die, and I didn’t want her to die alone,” Matt says.

Leia survives and is diagnosed with a genetic disorder. “It’s a wondrous thing to imagine how we all started from a single fertilized cell and became literally trillions of cells that all have to function in relatively perfect harmony,” says biologist Robert Drewell. “But it doesn’t always go perfectly.”

Somewhere in Leia’s family’s past, pieces of chromosomes switched places, with the result that Leia, years later, is missing dozens of genes. No one else in the world has DNA like hers — Leia’s case is unique, not merely rare — and doctors are unable to predict how her life will unfold.

From there, the film will offer an unflinching look at the joys, tribulations, setbacks and triumphs of raising Leia, whose disabilities and health problems mount. At age one, Leia has her first seizure. Her development grinds to a halt. Doctors diagnose her with a fatal brain disorder — a diagnosis that turns out to be incorrect. But by age three, Leia is still not walking or talking.

As Leia ages, we see how Matt and his wife Lucie adapt to taking care of her. How Matt carries her, how they communicate through gestures, nods, and a tablet kept at Leia’s side. We will see the agonizing decisions Matt and Lucie make about having additional children, weighing the risk that they could be born with the same disorder as Leia.

At the center of it all is Leia herself: innocent child, daughter, sister, radiant sphinx, beacon of pure love.

Based on hundreds of hours of archival footage shot by Leia’s father Matt, the film begins with the day Leia was born (in 2014). She was too weak to cry and too weak to breathe on her own. She was rushed to intensive care, where Matt stayed with her for 30 hours, afraid to leave even to go to the bathroom. “I thought she might die, and I didn’t want her to die alone,” Matt says.

Leia survives and is diagnosed with a genetic disorder. “It’s a wondrous thing to imagine how we all started from a single fertilized cell and became literally trillions of cells that all have to function in relatively perfect harmony,” says biologist Robert Drewell. “But it doesn’t always go perfectly.”

Somewhere in Leia’s family’s past, pieces of chromosomes switched places, with the result that Leia, years later, is missing dozens of genes. No one else in the world has DNA like hers — Leia’s case is unique, not merely rare — and doctors are unable to predict how her life will unfold.

From there, the film will offer an unflinching look at the joys, tribulations, setbacks and triumphs of raising Leia, whose disabilities and health problems mount. At age one, Leia has her first seizure. Her development grinds to a halt. Doctors diagnose her with a fatal brain disorder — a diagnosis that turns out to be incorrect. But by age three, Leia is still not walking or talking.

As Leia ages, we see how Matt and his wife Lucie adapt to taking care of her. How Matt carries her, how they communicate through gestures, nods, and a tablet kept at Leia’s side. We will see the agonizing decisions Matt and Lucie make about having additional children, weighing the risk that they could be born with the same disorder as Leia.

At the center of it all is Leia herself: innocent child, daughter, sister, radiant sphinx..

Read More

In a twist in the third act, a second cousin, aged 50, is found that shares Leia’s genetic anomaly. It turns out Leia is not unique. She is one of two. The family travels to Czech Republic to meet the cousin, Pavlinka, a moment that opens a kind of window into Leia’s own future, and raises questions about how people like Leia and Pavlinka are cared for.

As Matt and Lucie reflect on meeting Pavlinka, a geneticist in Canada becomes intrigued by Leia’s case. In 2024, he embarks on the sequencing and analysis of Leia’s genome, seeking
to probe the riddle of her translocation and its impact on her brain. These findings hold promise for a better epilepsy treatment, and might shift the entire trajectory of her cognitive development.

“Don’t be afraid,” Pavlinka’s father tells Matt and Lucie. “Everything is going to be OK. It won’t be the life you would have chosen for Leia, of course. You’ll always want more. But it will be OK, you’ll see. You’ll lead her through the world and she’ll be happy and you’ll be happy and it’ll be beautiful.”

Part meditation on raising a child who’s different, part love letter from father to daughter, Life is Strange, Leia Lu will be a unique documentary experience that challenges audiences and enriches their understanding of genetics, disability, parenting, the human spirit, and the redemptive power of love.

In a twist in the third act, a second cousin, aged 50, is found that shares Leia’s genetic anomaly. It turns out Leia is not unique. She is one of two. The family travels to Czech Republic to meet the cousin, Pavlinka, a moment that opens a kind of window into Leia’s own future, and raises questions about how people like Leia and Pavlinka are cared for.

As Matt and Lucie reflect on meeting Pavlinka, a geneticist in Canada becomes intrigued by Leia’s case. In 2024, he embarks on the sequencing and analysis of Leia’s genome, seeking
to probe the riddle of her translocation and its impact on her brain. These findings hold promise for a better epilepsy treatment, and might shift the entire trajectory of her cognitive development.

“Don’t be afraid,” Pavlinka’s father tells Matt and Lucie. “Everything is going to be OK. It won’t be the life you would have chosen for Leia, of course. You’ll always want more. But it will be OK, you’ll see. You’ll lead her through the world and she’ll be happy and you’ll be happy and it’ll be beautiful.”

Part meditation on raising a child who’s different, part love letter from father to daughter, Life is Strange, Leia Lu will be a unique documentary experience that challenges audiences and enriches their understanding of genetics, disability, parenting, the human spirit, and the redemptive power of love.

Read More
Matt meeting Pavlinka.
A black and white photograph of Pavlinka on a swingset as a child.

Click below to support the film. Your tax-deductible donation
will fund post-production and filming additional scenes.

Donate
homestorycastcrewcontactDonors
For inquiries, please contact:

100 out of 99 Productions
LifeisStrangeDocumentary@gmail.com

We've partnered with CNY Arts Inc, a 501(c)(3) organization, to make all donations tax-deductible to the extent allowed by law. If you need more information about making a donation, please contact us.
Website by Caption Design