tASHA

My story began before I was even old enough to remember.

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When I was born, I did not pass my newborn hearing screening, but doctors initially believed it was due to fluid in my ears. Over the next few years, my family tried multiple times to have my hearing tested, but we struggled to get clear answers.

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By age two, I was still having difficulty speaking, so I underwent a sedated hearing test called an Auditory Brainstem Response (ABR) exam. The results revealed significant bilateral hearing loss, and I received hearing aids at 2½ years old.

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My family moved to San Antonio so I could attend Sunshine Cottage School for Deaf Children and have specialized medical services. During that time, my parents began noticing that I wasn't progressing as quickly as my peers. My speech was delayed, I had facial weakness, my academic struggles became more apparent, and I was beginning to have difficulty raising my arms above my shoulders.

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We spent years visiting specialists and searching for answers. Eventually, we were referred to Dr. Abid, a neuromuscular specialist at Texas Children's Hospital. Within minutes of meeting me, she suspected facioscapulohumeral muscular dystrophy (FSHD).

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This was surprising because I had previously undergone genetic testing for muscular dystrophy through a saliva test, and the results were negative. Dr. Abid explained that FSHD requires specialized blood testing performed by a laboratory with expertise in diagnosing the condition. My blood sample was sent for testing, and within a month, her suspicion was confirmed.

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I was diagnosed with FSHD1.

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While receiving that diagnosis answered many questions, it also marked the beginning of a new journey for me and my family. Today, we continue to learn, advocate, and navigate life with early-onset FSHD, trusting God every step of the way and hoping to raise awareness for other families facing the same road.

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This is where my story continues...