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ELLIE DARBY-PRANGNELL suffers from a genetic condition called spinal muscular atrophy (SMA) that makes the muscles weaker and causes problems with movement.
“When I was born there were no signs of SMA,” says Ellie, 18, adding, “But as I started to grow my mom noticed that there was something wrong because I couldn’t walk. Over time I have lost a lot of strength.”
There are several types of SMA, which start at different ages. Ellie suffers from SMA type 2 that appears in babies who are seven to 18 months old. Her mom, Kim Darby, explains, “About the age of 13 months Ellie used to stand up and then all of a sudden her knee started to buckle. Gradually over the years it had an impact on her back and her back has collapsed down into scoliosis. She’s lost hand strength, she’s lost her head control, it’s made it harder for her to breathe and eat, but she gets on with it, she rolls with it, that’s what we do.”
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