Rett Stories: Minna

Life with Minna, who has Rett syndrome, requires patience and can be challenging, says her mom, Caroline. But, it is also an amazing experience for their family, brother Oscar, Minna’s dad Chris, and Caroline. “Minna is stronger than any child we know. She deals with all the challenges so well. She’s happy.”

At four years old, Minna is learning to use an eye-gaze communication device, recognizing words and expressing herself. “You don’t get to know what’s inside of her head all of the time,” said Caroline, “but when she says something, you get to know how she’s feeling for the day, and it’s just incredible.”

Minna’s family and caregiver, Randi, work with her daily on physical and occupational therapy. And after a long day of school and therapy sessions, like all children Minna is ready for some fun. She finds it in the pool. “Water is extremely calming for Minna,” her mom said. “It’s an entire sensory experience. She loves immersing her face in the water and just feeling free.”

Life with Minna is day by day. No one can know what the future holds, says Caroline, “But we’re just trying to shape our path into something that will work for our family.”