Jesy Nelson told her twin babies will never walk after devastating diagnosis

Jesy Nelson has revealed her twin girls, who were born prematurely in May, have been diagnosed with rare genetic condition Spinal Muscular Atrophy (SMA) that causes weakness in the muscles

Jesy Nelson reveals devastating diagnosis with her twin babies.

Jesy Nelson has shared the heartbreaking news that her eight month old twin girls have been diagnosed with rare genetic condition Spinal Muscular Atrophy, and may never walk. The 34-year-old singer and her musician fiancé Zion Foster, 27, welcomed twins Ocean Jade and Story Monroe Nelson-Foster in May.

Today the Little Mix star shared a video to Instagram that saw her pause to stop herself from crying multiple times as she said: “I am grieving a life I thought I was going to have with my children.”

SMA weakens every muscle in the body and leads to symptoms like floppiness, difficulty breathing and swallowing as well as delayed motor skills. Jesy said she is now acting as a full-time nurse to her girls and has had to do ‘things no mother should.’

The singer first went to her GP after her mum noticed the twins were not moving as much as they should be for their age. Having been advised that the babies will show slower development as they were premature, Jesy said she told herself not to “compare them” to other babies of the same age. After pushing for answers, Jesy’s twins were diagnosed with SMA Type 1.

Sharing the news on Instagram, Jesy said: “I wanted to come on here to share some news with you guys. I’m not actually sure where to start with this video.

“A few months ago my mum noticed that the girls were not showing as much movement in their legs as they should be.

The singer welcomed twins Ocean Jade and Story Monroe Nelson-Foster in May

Jesy Nelson, pictured with partner Zion Foster, said she’s hoping her girls can defy all the odds
“It wasn’t really a concern to me at the time,” said Jesy. “From the minute I left NICU I was told, ‘Your babies are premature so don’t compare your babies to other babies. They won’t reach the same milestones just take them as they are.’

“It didn’t really ring alarm bells to me. They are my first set of children and I was told not to compare to them. Health care visitors insisted everything was fine and the girls were healthy.

“There were a few signs later on that the girls were struggling to feed properly. We would take them to the GP and say ‘Our babies are not feeding as frequently as they should.’ They said it was fine and to try little and often.”

Jesy went on: “Long story short, after the most gruelling three to four months and endless appointments, the girls have been diagnosed with a severe disease called SMA Type One. It stands for Spinal Muscle Atrophy which affects every muscle in the body from legs, arms, swallowing.

“Over time it kills the muscles in the body. If it’s not treated in time, your baby’s life expectancy will not make it past the age of two

Jesy Nelson shared the girls’ diagnosis in a heartbreaking Instagram video

The emotional star struggled to speak as she explained the diagnosis
“Once the girls got treated it was a very rapid process, time is of the essence with this disease,” said Jesy.

“When they assessed the girls at Great Ormond Street, we were told they were never going to be able to walk. They would probably never regain their neck strength. They will be disabled.

“The best thing we can do right now is to get them treatment and hope for the best,” she added. “Thankfully the girls have had their treatment which I’m so grateful for. If they didn’t have it they would die.”

There is currently no cure for (SMA), but there are treatments and support available to help people have the best possible quality of life.

Explaining how her life has been turned upside down in the last four months, Jesy said: “I am grieving a life I thought I was going to have with my children.

“The hospital has become my second home. I feel like I’ve had to become a nurse within two weeks of getting the diagnosis. I’ve had to do stuff no mother should have to do to their child.

Jesy Nelson and Zion Foster went on This Morning with their girls when they were a few weeks old ( 
Image:
ITV)
“I made this video because the last three months have been the most heartbreaking time of my life.”

Breaking down in tears, Jesy said: “I know I have to be grateful. At the end of the day they are still here and that’s the main thing. They’ve had their treatment. I truly believe that my girls will defy the all the orders and with the right help they will fight this.”

After posting her brave video, a number of celebrities reached out with supportive messages. Jesy’s ex partner Chris Hughes shared: “A warrior Jess. Be easy on yourself. Sending prayers to you all, everyone is behind you guys.”

Love Island’s Shaughna Phillips told the new mum: “Sending you and your girls so much love and positive prayers, you are a superwoman and they are lucky to have you.” Towie star Jess Wright said she was “Sending you so much love and strength” with co-star Amy Childs adding: “I’m so sorry Jesy what your going through x sending love and strength to you and your beautiful girls xxx”

Jesy endured a complicated pregnancy which saw her undergo surgery after her girls diagnosed with twin-to-twin transfusion syndrome (TTTS).

Jesy Nelson’s twins Ocean Jade and Story Monroe Nelson-Foster

Jesy endured a complicated pregnancy and had to undergo emergency surgery and spent weeks in hospital
According to the NHS, TTTS affects 10 to 15% of identical twins who share a placenta and “can have serious consequences”.

The condition is caused by abnormal connecting blood vessels in the placenta which leads to an imbalanced blood flow from one twin to the other, leaving one with a greater blood volume than the other.

The singer underwent the emergency procedure and spent 10 weeks in hospital before giving birth to the twins prematurely at 31 weeks on May 15.

During her pregnancy, Jesy had also shared that her twins were monochorionic diamniotic (MCDA), meaning they share a single placenta but have their own separate sacs.

Jesy shared pictures of her girls in June saying “IHave never ever felt more lucky and blessed in my whole entire life”

Jesy said her girls were fighters and she knew they’d do what they could to fight the odds
Jesy’s news comes after she revealed she had filmed a six part documentary about her pregnancy and what she described as a “new chapter in her life”.

Jesy and Zion documented the highs and lows of their difficult nine months for a series with Amazon Prime.

Sharing the news on her Instagram, Jesy said: “I feel so excited and proud that we can finally reveal we have been filming our own series for Amazon! Letting the cameras in wasn’t an easy decision for us as it’s such a deeply personal time but I knew I wanted to tell my story in my own words. We opened the doors fully and I’m really looking forward to letting you all in as I navigate my way to becoming a first time mum to our beautiful baby girls Ocean and Story.

“I’ll be honest, it’s not been easy as it’s been such a high risk pregnancy, so you’ll see all the highs and lows and rollercoaster of emotions we have been going through. I hope you will all join me on this journey as I really open up and say goodbye to the past and enter this new chapter in my life. I hope you love it as much as we do”

Speaking before the twins were born, Zion told the Mirror that the turbulent pregnancy had brought him and Jesy closer together.

He explained: “We’ve literally grown to understand each other on a deeper level. And I think we really understand how much we actually care about each other.

“I think it’s at these times when you really, really know what love you have and what your relationship means.

“And I think for me and Jess, this has just taken it to a whole other level of us knowing we are literally made for each other.”