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McDonough family raises awareness for genetic disorder
by Christine Fonville
August 20, 2014 12:08 PM | 2690 views | 0 0 comments | 9 9 recommendations | email to a friend | print
Staff / Christine Fonville. McDonough resident Julia Miller reads to her daughter, Eliza Smith, 4, who has Type I Spinal Muscular Atrophy.
Staff / Christine Fonville. McDonough resident Julia Miller reads to her daughter, Eliza Smith, 4, who has Type I Spinal Muscular Atrophy.
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August is National Spinal Muscular Atrophy Awareness Month and one McDonough family is sharing their story in the hope that more information, funds and research can help people living with the genetic disorder.

Julia Miller and her mother, Connie Miller, said when Julia’s daughter, Eliza Smith, was born in 2010, she appeared to be a happy, healthy baby until she came down with a respiratory virus and was struggling to breathe.

“We took her to Egelston children’s hospital in Atlanta and immediately a doctor noticed she didn’t move as much as most babies her age,” Julia Miller said.

“From there, they did genetic testing and one of the doctors asked if I’d ever heard of SMA and I hadn’t, but when she brought me a piece of paper with the facts and symptoms, it threw me for a loop.”

Known as a disease of the motor neurons, it affects the voluntary muscles that are used for activities such as crawling, head and neck control, swallowing and walking, affecting about one in every 6,000 babies born and genetically carried by one in 40.

Eliza was diagnosed with Type I, the most severe, and must use equipment to help her breathe.

Although the disorder is the No. 1 genetic killer of children under 2, Eliza continues to beat the odds and is now 4 years old.

When it comes to learning and brain cognition, Eliza is much like other children her age and is “there 100 percent mentally,” Julia Miller said.

“Most children with SMA are absolutely there and have thoughts and feelings just like any other person,” she said.

Some of Eliza’s favorite activities include watching “Dora the Explorer,” playing Candy Crush, being held and having stories read to her.

“She’ll shake her head for yes and no if she wants or doesn’t want something and has even shocked her doctors by speaking a few words and singing and making noises along with music,” Connie Miller said.

Although Eliza’s family said they think positively and have hope for the future of children diagnosed with the disorder, they believe more community awareness and knowledge can help push research forward.

“Social media has helped us connect with other families throughout Georgia who have helped us with some of the supplies Eliza needs as well as special toys and ways for her to communicate with us,” Julia Miller said.

Information: www.fsma.org

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