Patients & Visitors

Harmony's Story

 

​Harmony Brown was diagnosed with spinal muscular atrophy (SMA) a week before her first birthday. Before that milestone, her parents, Alina and Wilfred took Harmony to visit her pediatrician for normal checkups. When Harmony was about four months of age her parents became concerned because her development was slower than expected. Their pediatrician referred them to pediatric neurologist, Saunder Bernes, MD at Barrow Neurological Institute at Phoenix Children’s. One test confirmed their fear; Harmony had spinal muscular atrophy - a genetic disease that affects the motor neurons in the spinal cord, resulting in worsening muscle weakness affecting the ability to move, breath, or eat.

Currently, there is no cure for spinal muscular atrophy. However, the key to medically managing it is through early detection. A newly approved treatment, Spinraza, is offered at Phoenix Children's. Dr. Bernes and Harmony’s family decided she would be a good fit to receive Spinraza. After four treatments, her progress has amazed family and physicians alike. Outcomes of this treatment are exciting with most patients demonstrating improved motor functions.

Harmony’s parents said it is “like night and day” and Dr. Bernes has called it “the highlight of my career.” Harmony’s family is excited about the treatment. The care they received at Barrow Neurological Institute at Phoenix Children’s has made a lasting impact. Harmony’s father, Wilfred Brown said, “Everyone is invested in her future as much as we are as her parents.”

August is spinal muscular atrophy awareness month. Phoenix Children’s encourages families to regularly visit their primary care provider and for providers to be aware of the signs and symptoms associated with the disease. Spinal muscular atrophy is sometimes difficult to diagnose, as symptoms can look like other conditions or medical problems. Also, each child may experience symptoms differently. Learn more about spinal muscular atrophy.

Barrow Neurological Institute at Phoenix Children’s Neuromuscular Program offers comprehensive care for children diagnosed with spinal muscular atrophy. Pediatric neurologist, Saunder Bernes, MD, serves as the medical director partnering with Pulmonary, Gastrointestinal and other specialists to meet the complex needs of these children.

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