"We were told that they're probably never going to be able to walk, they probably will never regain their neck strength, so they will be disabled, and so the best thing we can do right now is to get them treatment, and then just hope for the best, she said. Thankfully, the girls have had their treatment, which you know, I'm so grateful for because if they don't have it, they will die."
"She added that the signs to look for were floppiness, an inability to hold themselves up without support, a frog-like positioning of the legs without much movement, and rapid breathing in the tummy. She added: If anyone is watching this video and they think they see these signs in their child, then please, please take your child to the doctor, to the hospital, because time is of the essence, and your child will need treatment."
Jesy Nelson and her fiancé Zion Foster welcomed twins Ocean Jade and Story Monroe Nelson-Foster in May after premature birth. The twins were diagnosed with spinal muscular atrophy type 1 following four months of hospital appointments. Medical assessment indicated they are unlikely to walk or regain neck strength, making early treatment critical and potentially life-saving. The girls have received treatment; without treatment SMA1 can be fatal. Recognizable signs include floppiness, inability to hold themselves up without support, frog-like leg positioning, and rapid abdominal breathing; immediate medical evaluation and prompt treatment improve outcomes.
Read at www.theguardian.com
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