Forsyth County baby battling rare genetic muscle disorder

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PFAFFTOWN, N.C. – Eight-month old Sadie Hopwood is battling something no one can figure out. Just a few months after being born, her family started noticing she was losing muscle control.

When she stopped eating in December, the family took Sadie to Brenner Children Hospital in Winston-Salem where they say doctors diagnosed her with SMA (spinal muscular atrophy), a rare genetic muscle disorder with no cure.

“Doctors said we are going to set you up with hospice and we are going to send you home,” said Sadie’s mom Logan Hopwood. “They told us you need to love on her while you got her, just enjoy your family time.”

SMA takes away the ability to walk, eat and breathe and, according to Cure SMA, it is the number one genetic cause of death for infants.

Hopwood says doctors and Brenner Children’s Hospital would later go back and forth with the SMA diagnosis, retracting it several times.

After spending six weeks in Brenner Children’s Hospital, with no answers, the family moved Sadie to Duke Children’s Hospital where doctors who specializes in SMA was waiting.

“They spoke our language pretty much from the day we got there,” said Blake Hickman, Sadie’s father. Hickman says at Duke Hospital treatment to help Sadie breath and cough immediately got underway improving her quality of life and allowing her to go home. “We were able to bring her home in four days.”

The family says doctors at Duke conducted several tests and continued to see her. One test, according to the family, shows she is missing a piece of one chromosome, but is not believed to be related to what is attacking her muscles.

“We are still waiting for more test results,” said Hopwood.

The family has been sharing Sadie’s journey on the Facebook page, Saving Sadie, where they’ve connected with other families battling SMA and similar diseases.

They’ve also gained messages of support from people around the world.

“We know we have God on our side and we know we have a strong community,” said Hopwood. “That makes it worth it everyday to keep trying.”

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