Ex-Little Mix star Jesy Nelson becomes patron of SMA UK after twins’ diagnosis
By Carla Feric, Press Association Entertainment Reporter
Former Little Mix star Jesy Nelson has revealed that she has become a patron of charity Spinal Muscular Atrophy UK after her twin babies were diagnosed with a form of the rare genetic condition.
The 34-year-old gave birth to twins Ocean Jade and Story Monroe Nelson-Foster prematurely in May with fiance Zion Foster, and Nelson has been posting about their journey on Instagram to raise awareness about SMA ever since.
The singer took to Instagram on Tuesday night and revealed that as part of her advocacy she has become a patron for the charity which, according to its website, is the UK’s leading charity for the condition.
Nelson wrote: “Today I’m incredibly proud to share that I’ve officially become a patron of SMA UK.
“This truly means so much to me. I’ve been deeply touched by the SMA community from the strength of the children, the resilience of the families, and the love that surrounds them every single day.
“I’ll be using my voice to keep raising awareness not only for my girls, but to support families going through the same experiences, and campaigning for the SMA test to be added to the newborn screening heel-prick test so more babies can get the help they need as early as possible.”
Nelson also encouraged her followers to donate to the charity, adding: “Absolutely anything makes a difference. Any support, donations, sharing, conversations… every action helps bring awareness and hope.”
In a message posted to the charity’s website, Nelson said: “Becoming a Patron of SMA UK honestly means so much to me.
“This charity has been there for families for years, standing by them, lifting them up and fighting when things felt impossible.”
She said meeting the team behind the charity has shown her what “real strength and unity looks like”, adding: “When we come together, we are powerful, and we are not going to stop until real change happens.
“I’m beyond proud to take on this role, to stand up for every single person in the SMA community, from tiny babies to adults living with SMA and I will keep campaigning with everything I’ve got, for my girls and for every family who deserves to feel seen, heard and supported.”
According to its website, SMA UK was founded in 1985, and aims to improve the lives of people living with the condition by offering support and information.
The charity also funds and supports research into the clinical development of drug treatments to help those affected with the condition.
As part of the singer’s activism, she launched a petition last week which aims to get screening for SMA added to the newborn blood spot screening test, also known as the heel-prick test, which screens for serious health conditions.
The petition has since received more than 142,000 signatures at the time of writing, meaning the issue will be considered for a debate in Parliament.
Nelson also met with UK health secretary Wes Streeting last month to speak about the life-changing impact early detection of the condition could have had on her twins.
Last month, the singer revealed that her twins had been diagnosed with SMA1, and said her daughters’ diagnosis would mean they are unlikely to ever be able to walk or regain their neck strength.
The condition causes muscle weakness, movement problems, problems with breathing and swallowing, muscle tremors, and bone and joint problems, according to the NHS.
Speaking to the Press Association earlier this year, Nelson said she is not going to stop talking about her twin babies’ diagnosis until “something changes”.
