Singer Jesy Nelson today shared a video to Instagram revealing the heartbreaking news her eigh-month-old twin daughters who were born prematurely may never walk.
The 34-year-old had to stop herself from crying a number of times as she said she was “grieving a life” she thought she’d have with her children. Ocean Jade and Story Monroe were born in May to Jesy and her musician partner Zion Foster, 27.
The baby girls were dignosed with Spinal Muscular Atrophy which is a rare genetic condition which weakens muscles and can lead to breathing and swallowing difficulties and delayed motor-skills.
The Mirror reported how 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.
https://www.instagram.com/reel/DTFcIARCLE1/?utm_source=ig_web_copy_link&igsh=NTc4MTIwNjQ2YQ==
“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.
“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. Children are born with SMA if both parents have a faulty gene that causes the condition — one in 40 is a carrier.
Prior to 2019, babies with SMA type 1 often wouldn’t survive until their second birthday, and infants with the milder type 2 would never walk, facing life in a wheelchair as well as multiple surgeries and respiratory infections. Iin the past five years treatments have been approved for use on the NHS that can stop the disease in its tracks.
The catch is that they need to be started within the first weeks, or even days, of life. Babies in the UK aren’t tested for SMA, for many the diagnosis comes too late for this. Campaigners and senior experts are pushing for that to change.
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.
“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.”
Jesy’s partner Zion – who proposed to her in September – also responded by sharing his own message of hope. The dad shared a brand new photo of the girls, as he said they were ‘smiling through the challenges.’
“Daddy loves you so much,” he added.
Jesy endured a complicated pregnancy which saw her undergo surgery after her girls diagnosed with twin-to-twin transfusion syndrome (TTTS).
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’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.