August 2025 - Tova Larsen

Tova Larsen is a 2-year-old with Junctional Epidermolysis Bullosa. She lives with her family in Saskatchewan, Canada.

Two-year-old Tova is the youngest of five children to Kyle and Jordyn Larsen of Saskatchewan, Canada. When she was born, her parents noticed she was missing fingernails and that her skin peeled during skin-to-skin contact. At just three months old, doctors diagnosed her with Junctional Epidermolysis Bullosa and doctors warned she would not live to see her first birthday. Tova proved them wrong when she celebrated her second birthday this year on June 22.

Managing EB requires constant vigilance. Tova is fully bandaged from her ankles to her torso to protect her skin, with each bandage change lasting about three hours and taking place every other day. As with other EB patients, bath time and bandage changing is often painful and exhausting. To manage pain and wound itching, Tova takes medication and gets a lot of snuggles from her momma. While Kyle and Jordyn are her primary caregivers, Tova also receives help from her older siblings when needed.

Because EB causes blisters in her mouth, eating is often painful, making weight gain a struggle. Recently, Tova had a G-tube (gastrostomy tube) placed to ensure she receives the nutrition she needs. Though her parents were hesitant at first, the change has already helped her gain weight. Support from another EB parent, Morgan — whose daughter, Brooklyn, also has a G-tube — gave them the reassurance they needed to take this step.

In just two years, Tova has been hospitalized eight times for illnesses such as RSV, stomach flu, recurrent fevers, and failure to thrive. EB also affects her breathing, and she undergoes airway expansion procedures to help her breathe more easily.

Despite these challenges, Tova continues to make progress. Because EB weakens muscles and bones, crawling and walking have been delayed — but recently, she has begun crawling and standing, milestones her family celebrates with pride.

Although EB impacts Tova’s vocal cords, it doesn’t keep her from communicating or connecting with family and friends. She communicates effectively through sign language, gestures, head movements, and mouthing words. Through these forms of communication, Tova lets her personality shine, making everyone she meets laugh and fall in love with her.

Specialized EB care is limited in Canada. Many medications and therapies available in the U.S. are not accessible to Canadian families. For now, Kyle and Jordyn travel six hours each way to Alberta Children’s Hospital for Tova to see specialists. They are also considering relocating to the United States to expand her treatment options and access EB-focused care.

While EB shapes much of her daily life, it does not define Tova. She is a lively toddler who loves coloring, puppies, and kittens. Her family describes her as funny, sassy, and determined — a little girl who knows what she wants and makes sure everyone else knows it too.

Tova’s journey reflects both the daily challenges of EB and the extraordinary resilience she brings to each day. Against the odds, she continues to grow, learn, and brighten the lives of those around her. You can purchase a Team Tova t-shirt from our shop in August 2025 only! Wearing this shirt will surely spark conversation and give you the opportunity to help us spread Tova's story. All proceeds raised from the sale of Tova's shirt will be donated to Debra Canada.

You can watch our full interview with Jordyn and Kyle Larsen — with a special appearance by Tova below!