Warning signs of rare genetic disease after Jesy Nelson’s twins’ devastating diagnosis

Need to know

Pop singer Jesy Nelson revealed her newborn twins have been diagnosed with a life-changing disease that will mean they may never walk or regain their neck strength again

Everything you need to know

1. Jesy Nelson’s twins – Ocean Jade Nelson-Foster and Story Monroe Nelson-Foster – have been diagnosed with spinal muscular atrophy type 1 (SMA1). The disease is a rare and severe genetic condition that affects muscle strength and movement, meaning some children will fail to walk and talk as they get older.
2. Possible early warning signs include: floppiness, difficulty holding their head up, weak or reduced movement, shallow breathing, trouble feeding or swallowing and a weak cry.
3. Medical professionals stress that early diagnosis can be life-changing. In recent years, new treatments have transformed outcomes for some children with SMA, particularly when started as early as possible.
4. The 34-year-old singer and her musician fiancé Zion Foster, 27, welcomed daughters Ocean Jade and Story Monroe Nelson-Foster in May after a difficult pregnancy.
5. The former girl band star first went to her GP after her mum noticed the twins were not moving as much as they should be. After the twins were struggling to feed, Jesy pushed for her answers and her daughters were diagnosed with SMA Type 1.
6. Jesy has been told her twins may never walk or regain their neck strength. There is currently no cure for SMA, but there are treatments and support available to help people have the best possible quality of life.

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