Sofia's Inspiring Journey with SMA

Published on: 07/26/2023

While Sofia may never be able to walk on her own, her medical limitations don’t slow her down.

In Sofia’s 6 years of life, she has already overcome more medical challenges than most adults. Sofia was born with spinal muscular atrophy (SMA) type 2, a genetic condition that affects the spinal cord’s ability to control the muscles, decreasing and limiting mobility. SMA is a progressive condition and children with SMA get weaker as they grow.

Sofia’s family emigrated from Cuba to Miami to find better medical care. Her family says they are grateful to have been connected to Nicklaus Children’s Hospital.

“We were amazed at the number of physicians, nurses and specialists who evaluated Sofia from the first day,” said her grandmother, Damaris. “We knew our prayers had been answered.”

Dr. Migvis Monduy, pediatric neurologist and director of the Neuromuscular Program within the hospital’s renowned Brain Institute, says that for children with SMA like Sofia, the goal is to prevent further deterioration and improve her quality of life.

Patient Sofia with Dr. Monduy

Sofia visits Nicklaus Children’s every 4 months for treatments with a medication that helps preserve the function of motor neurons in her spine which in turn helps maintain the strength in her muscles, especially her upper body strength, and prevent further progression of SMA. She also receives weekly physical therapy and visits the Nicklaus Children’s Orthopedic, Sports Medicine and Spine Institute where they utilize casting techniques to help stretch her muscles and bear weight on her legs.

It is not known if Sofia will ever be able to walk, but she continues to push hard in her weekly physical therapy sessions. In her free time, she loves to listen to music, model and even dance by moving from side to side.

Despite the difficult journey that Sofia has endured, she is a bright, happy child. Consider donating to Nicklaus Children’s to help children like Sofia.

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