What is SMA? Jesy Nelson and Zion Foster set to co-parent twins with condition
What you need to know about spinal muscular atrophy as Jesy Nelson shares update
Jesy Nelson and her former fiancee Zion Foster have committed to co-parenting their twins, who have been diagnosed with spinal muscular atrophy (SMA).
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The former Little Mix singer, 34, announced on Monday she had separated from the father of her children, just weeks after she revealed their SMA1 diagnosis.
Nelson shared at the start of the year that Ocean Jade and Story Monroe Nelson-Foster are both unlikely to walk as they have the rare condition.
She has since been raising awareness about it, and nearly moved Wes Streeting to tears when she made the case for a programme to detect the condition, in a TV appearance.
"They are fully united in co-parenting. Their priority continues to be the well-being of their daughters,” a spokesman told the Sun.
But what is SMA?
What is SMA?
Spinal muscular atrophy (SMA) is a rare genetic condition that causes muscle weakness and gets worse over time, causing some sufferers to require aids for walking.
There are four types of SMA:
- Type 1 is found in babies less than six months old, and this is the type Nelson’s children have been diagnosed with,
- Type 2 is found in babies and toddlers aged six to 17 months old,
- Type 3 is found in children and teenagers from 18 months to 17 years old,
- Type 4 is for adults 18 years old and over
According to the NHS, symptoms typically include muscle weakness, movement problems, problems with breathing or swallowing, twitching or shaking muscles (tremors), and bone and joint problems.
How it affects sufferers can differ greatly, with some having typical movement until noticing symptoms later, while others can be affected from birth.
Symptoms are most often noticed in babies and toddlers while SMA is usually more severe the earlier symptoms begin.
Nelson wrote on Instagram: “Nothing or no one will ever be able to prepare you as a parent for NICU. It’s the most scary overwhelming feeling of emotions not being able to feel like you can protect your babies.
“Naturally as a mother you just want to hold them and comfort them when they cry but you can’t because there are what feels like a million wires coming out of them and tubes and masks in the way with people poking and prodding them. It breaks your heart into a million pieces.”
There is no cure for SMA but there are medicines that target the altered genes, and the NHS offers physiotherapy and mobility equipment to help sufferers manage.
The NHS states: “A range of health professionals may be involved in your or your child's care.
“They'll help to create a care plan and advise you about which treatments are suitable for your specific needs.”