Spinal muscular atrophy (SMA) is a rare, genetic disorder that impacts the muscles, making them progressively weaker over time. To combat this muscle atrophy, patients must exercise their muscles to keep them strong. As the lungs are often impacted by this condition, many patients must work to keep them healthy and functioning. Tabitha Haly is one of these patients, and she exercises her lungs in a unique way: by singing.
Tabitha was diagnosed with SMA at just nine months old and has noticed her symptoms progressively worsening ever since. She points out simple tasks that she used to be able to do without problem, such as turning a doorknob, that now seem impossible to her. This has been a source of frustration for Tabitha, as it is for many patients. Luckily, her father introduced her to the perfect outlet at just three years old: music.
For years, singing and songwriting have been a comfort to Tabitha. It has helped her and pushed her as she pursued a degree at Pace University, and continued to do so as found her career in computer science. Now, she is a vice president at JP Morgan Chase, showing that all of her hard work has paid off.
While music is definitely a comfort and way to stay strong for Tabitha, it is not the only thing she has to do to treat her SMA. She participates in physical and occupational therapy and has a health aid 24/7. A ventilator is also necessary at night. While this intense treatment regimen can be frustrating and overwhelming, music is always there to provide an outlet.
Tabitha explores the themes and emotions of her own life through her music. In 2019, she released her first album, titled “I Wrote Life.” The first single off the album is “I am Able,” and it focuses on being able to fight and accomplish anything regardless of one’s situation. Speaking about the song, Tabitha said,
“This particular song is a reminder saying I am able. I can help someone. I can be someone. I can be generous to someone. And most importantly, I can be loved like anyone else.”
Through her music, she advocates and empowers others. During her performances, she is able to educate her audience about life with mobility problems and rare diseases. She wants everyone to feel that they can accomplish anything that they put their minds towards.
Spinal muscular atrophy (SMA) is rare genetic order that is characterized by muscle weakness and degeneration. It affects one in every 10,000 people but can vary in severity from person to person. A mutation in the SMN1 causes this condition, and it causes the loss of motor neurons in the spinal cord and brain stem. Due to this loss, muscles weaken and atrophy, specifically the muscles used for walking, breathing, swallowing, crawling, sitting up, and moving the head.
The symptoms of this condition depend on the severity and type of SMA.
- Type I is the most severe and is diagnosed after birth. The symptoms of this type include developmental delay, the inability to sit up or move the head, and trouble with breathing and swallowing.
- Type II is diagnosed in children between six and twelve months old, and they experience trouble with standing and walking.
- Those who have type III are diagnosed between early childhood and adolescence and cannot walk or climb stairs independently.
- Type IV occurs in adults over 30 and is the least severe type. People with this form of SMA usually have mild muscle weakness, problems with breathing, twitches, or tremors.
Once these symptoms are noticed, a diagnosis is confirmed through neurological examination and genetic testing. While there is no cure for SMA, there are treatments available. Physical therapy, braces, and surgery can all help to improve movement. Noninvasive respiratory support and tracheostomies can address issues with breathing while gastrostomy can help with eating. Spinraza is the first FDA-approved treatment for SMA, and Zolgensma and Evrysdi have also recently been approved.
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