Family by Fate: The Landstroms’ Kleefstra Syndrome Journey

Maja Landstrom is 12 years old, full of joy, and living with Kleefstra syndrome—a rare genetic condition that affects development and communication. She shares her days with her big brother Oliver, 14, and her parents, Tanja and Mats, in the Shenandoah Valley of Virginia.

Their family journey is one marked by resilience, connection, and an unwavering commitment to joy.

From Sweden to Virginia: A Life Rooted in Love and Adventure

Mats is originally from Sweden, and every summer, the Landstroms travel back to visit grandparents and extended family—this year around the Midsommar celebration of the summer solstice. These visits are filled with tradition and fun: waterparks, castles, jump parks—and, of course, Swedish candy.

At home, Mats and Oliver speak Swedish, and Maja has picked up quite a bit. But as her mom Tanja says, “Maja’s real language is joy. She makes friends wherever we go.”

The Diagnosis That Took Six Years

The Landstroms’ journey with Kleefstra syndrome began before Maja was born. Prenatal screenings suggested abnormalities, but no clear answers came. After her birth, Maja missed developmental milestones, and despite early intervention, the family remained in search of clarity.

In 2019, when Maja was six, they finally received a diagnosis—thanks to advances in artificial intelligence. “They used AI to analyze genetic markers and compare them against a global database,” said Tanja. “That’s how we got the Kleefstra diagnosis, confirmed with a blood test.”

For the family, it was a turning point. “It was bittersweet,” said Mats. “It answered a long-standing question, but it also opened a new chapter.”

Finding Community

Shortly after the diagnosis, a connection with the Rhyne family led them to IDefine. That same year, they attended their first Southern Roots Reunion, a fundraiser and gathering of Kleefstra families that quickly became an annual tradition.

“It felt like coming home after being stranded on an island,” said Tanja. For Oliver, it was just as meaningful. “He told us how nice it was to be around siblings who understood Maja—without needing an explanation.”

Therapies and Joy

Maja doesn’t let anything hold her back. She began therapeutic horseback riding at age six and was named Grand Champion at the Therapeutic Riding Association of Virginia competition in 2023. “There’s a special connection between her and her horse,” said Tanja. “And the riding really helps her core strength and balance.”

In the winter, she’s on a development ski team at Bryce Resort. She also bikes with Oliver, jumps on the trampoline, and brings joy to everyone she meets.

Oliver’s favorite thing about Maya is, “How happy she is and how willing she is to try new things.”

Mats adds, “Her superpower is making people happy. During lockdown, she was the one who kept our spirits up—always waking up with a smile.”

The Kleefstra Clinic and Looking Ahead

In 2021, the Landstroms visited the Kleefstra Clinic at Boston Children’s Hospital, where they met Dr. Siddharth Srivastava. “It was incredible,” said Tanja. “Our pediatrician now collaborates with Dr. Sid, which helps us evaluate therapies and get the support Maja needs at home.”

They also made the most of the trip: visiting the Boston Children’s Museum, the aquarium, and Boston Common playground.

The family plans to enroll in the Natural History Study for Kleefstra syndrome, helping researchers better understand the condition. “It’s one way we can give back,” said Mats. “We believe in contributing however we can—whether that’s through research, awareness, or fundraising.”

Though they haven’t yet connected with Kleefstra families in Sweden, the Landstroms have learned a Swedish Facebook group for KS families recently launched.

For now, their strongest ties are with the “family by fate” they’ve found through IDefine and events like the Kleefstra Syndrome North American Family Conference.

Final Reflections

To families just starting out, Tanja offers this advice: “The diagnosis doesn’t change who your child is. What it changes is your access to a community that gets it. That’s the real gift.”

“Our hope for Maja is that she lives a full life—surrounded by community, seen for her strengths, and included in the world around her,” said Mats. “She’s a light. And we just want to help her shine.”

(Watch this interview with the Landstrom family from the 2024 Kleefstra Syndrome North American Family Conference.)