Mother fights to keep 4-month-old son with SMA alive

Spinal muscular atrophy is a genetic, progressive neuromuscular condition and those that have it as infants usually die by the age of 2.
Published: Jul. 30, 2020 at 7:27 PM EDT
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MOUNDSVILLE, W.Va (WDTV) - After giving birth a month early, Mariah Cusick was ready to take her baby boy, Koehyn, home without any obstacles, but three weeks after leaving the hospital, Cusick noticed his muscle tone weakening.

“He was fine at birth and then he need oxygen for six hours after birth and his blood sugar was low,” she said.

After noticing her son’s muscle tone weakening, it became a journey. From Marshall to Monongalia County, Koehyn was admitted into J.W. Ruby Memorial Hospital on April 8. By April 26, Cusick was informed that her son had spinal muscular atrophy (SMA).

“I’m only 21 and I didn’t know anything about this, so I was scared.”

“I was reading all kinds of stuff that was just saying that he would die probably and I was so scared so I just wanted to do everything that I could,” she said.

Cusick said those at the hospital did everything they could to inform her of the disease.

“It is a progressive neuromuscular condition, meaning that there is a decline in motor abilities over the course of their life, so a very sad thing to talk about,” MD, Sarah McGuire from WVU Medicine said.

After grasping onto a better understanding of SMA, Cusick started a GoFundMe to help raise funds for her sons treatment that can cost over $2,000,000. It’s called Zolgensma. It will allow Koehyn to make huge progress in restoring his muscles, and although it’s expensive, Cusick said every penny is worth saving her sons life.

“It’s definitely a rough road in the beginning, but it definitely get’s better,” she said.

Koehyn’s GoFundMe can be found here.

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