Jesy Nelson has given fans an update after being told that her eight-month-old twin babies will ‘never walk’.
Jesy and partner Zion Foster welcomed their twin daughters prematurely in May this year after a turbulent pregnancy, having spent most of it hospitalised.
The girls, Ocean Jade and Story Monroe Nelson-Foster, have been diagnosed with a muscular disease, Spinal muscular atrophy (SMA).
After an emotional few days, the former Little Mix star revealed she is starting a petition to get SMA included in the newborn screening.
Heel prick tests, carried out around five days after birth, are not mandatory but are offered to check for nine rare conditions, including cystic fibrosis and sickle cell.
‘I just need you to know that I am so determined to make this happen,’ Jesy said on Instagram. ‘I am going to fight as much as I can to make this part of the newborn screening.’
There are five types of SMA, with zero being the most severe but it is thankfully incredibly rare.
Jesy’s daughters have type one, which is also known as Werdnig-Hoffman disease or infantile-onset SMA.
It is the most common form, with symptoms including trouble breathing, coughing, and even swallowing.
When she shared the diagnosis, Jesy revealed the girls will never be able to walk and never regain their neck strength, so they will be disabled.
She added that they have begun having treatment, claiming they would have died without it, as life expectancy for those with the most severe cases is sadly short.
Jesy thanked her fans ‘genuinely so much from the bottom of my heart for the outpour of support and beautiful messages for me and other families dealing with this horrible diagnosis.’
She shared: ‘I am genuinely so overwhelmed from the level of support and I just want to say thank you for sharing, learning about it, took the time to watch it and send their beautiful messages, thank you I appreciate it so much.’
Currently, SMA is not one of the conditions that the blood spot tests for, although there are groups already campaigning to introduce it.
On Tuesday, Health Secretary Wes Streeting told ITV News he backed the singer’s move to challenge the screening process for the rare genetic condition, and said she was ‘right to challenge and criticise how long it takes to get a diagnosis’.
Scotland has announced it will start screening babies for SMA from the spring, but the test is not currently available for newborns elsewhere in the UK.
As Jesy noted, it is ‘under review’ so she promised to keep fans updated, adding that she will appear on This Morning to talk about her ‘baby girls’.
‘I love you all so much and I can’t thank you enough for the support. We have a long way to go but I love you so much.’
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