Jesy Nelson shares emotional update after baby twins diagnosed with 'severe' disease
Jesy Nelson has vowed to 'fight' for change in the healthcare system after her twin daughters were diagnosed with a rare genetic condition.
The Romford-born singer, 34, announced that her girls - named Ocean Jade and Story Monroe - have SMA (Spinal Muscular Atrophy) in an emotional video on Sunday (4 January).
She explained that the disease 'affects every muscle in the body down to legs, arms, breathing and swallowing', while detailing the devastating prognosis that doctors had delivered for the twins.
Jesy said staff at Great Ormond Street Hospital had told her her daughters would probably not be able to walk.
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According to the NHS, SMA can cause muscle weakness, and it only gets worse over time - and symptoms include bone and joint issues, tremors and movement problems, among others.
There is currently no cure for the condition, although treatments are available to help people with it achieve the best possible quality of life.
Jesy explained that the twins, who she shares with her partner Zion Foster, have recently undergone treatment and have been attending an 'endless amounts of hospital appointments'.
"I practically feel like the hospital has become my second home," she added. "I almost feel like I've had to become a nurse in the space of two weeks of getting their diagnosis."
Ocean and Story were born in May last year and arrived in the world two months premature.
In the wake of her bravely sharing the details of her daughters' health issues on social media, Jesy has received a ton of support from fans, as well as from other families who are also dealing with SMA.
And in one of her latest posts shared on Tuesday evening (6 January), the mum explained she is launching a petition which she hopes can help other parents.
In a video shared to her Instagram Story, Jesy thanked people for the 'outpouring of support and beautiful messages' after she shared the 'horrible diagnosis' that Ocean and Story have received.
"Genuinely, I am overwhelmed with the amount of support," she told her 9.7million followers.
"I just want to say thank you to everyone that has shared it, that has wanted to learn about it, taken the time to watch it and sending their beautiful messages.
"Thank you from me and also the SMA community, we appreciate it so much."
Jesy then revealed that she is launching a petition to 'try and get SMA on the newborn screening heel prick testing from birth'.
"I just need you to know that I am so determined to make this happen," the former X Factor star said. "So I am going to fight as much as I can to make this part of the newborn screening.
"It's currently under review, so I will keep you updated, and also I will be on This Morning tomorrow talking about my baby girls.
"I love you all so much and I can't thank you enough for the support. We have along way to go but I love you so much."
The NHS explains that newborn blood spot (NBS) screening is 'offered to parents to test their baby for 10 rare but serious health conditions for which early diagnosis and treatment can improve the baby’s health'.
A heel-prick blood sample is taken around five days after birth, and results are usually returned within six weeks, but currently, this test doesn't detect SMA.
Instead, the NBS screening can detect conditions such as cystic fibrosis, congenital hypothyroidism, glutaric aciduria type 1, hereditary tyrosinemia type 1, homocystinuria, isovaleric acidaemia, maple syrup urine disease, medium-chain acyl-CoA dehydrogenase deficiency, phenylketonuria, and sickle cell disease.
The NHS adds: "A pilot evaluation has been undertaken in some areas of England to screen specifically for severe combined immunodeficiency, a group of rare genetic conditions that affect the development and function of the immune system and cause a newborn to be susceptible to infections. Final data analysis is currently underway, with recommendations to follow."
Topics: Celebrity, Celebrity News, Health, Parenting, NHS, UK News
Olivia Burke