After revealing that her daughters Ocean Jade and Story Monroe have been diagnosed with a devastating genetic disease, the former Little Mix star said, “it’s been the most heartbreaking time of my life.”
Jesy Nelson has said doctors initially dismissed her fears for her eight-month-old twin babies before they were diagnosed with a severe form of a rare muscle wasting disease. The Little Mix star welcomed her daughters Ocean Jade and Story Monroe prematurely at 31 weeks with fiancé Zion Foster in May last year.
Jesy revealed to her followers over the weekend that her young daughters could pass away before turning two without receiving medical care. She claimed that her mother had previously told her not to compare their growth to other babies because they were born early because she had noticed they “weren’t showing as much movement.”
READ MORE: ‘My kids have same illness as Jesy Nelson’s twins, one will live a normal life’READ MORE: Jesy Nelson told her twin babies will never walk after devastating diagnosis
Jesy remarked, “A few months ago, my mother noticed that the girls weren’t moving their legs as much as they should be.” I wasn’t really concerned at the time because I was told from the beginning that “your babies are premature, so don’t compare your babies to other babies.”
They won’t accomplish the same goals, but they will continue to do so when necessary.
Despite Jesy’s concerns over their diet, the singer claims that health visitors also gave her some relief. The girls were described as “great and healthy,” according to them.
Ocean and Story were later found to have a severe muscular condition called SMA Type 1 after going through several months of tests. Great Ormond Street Hospital evaluated her daughters.
Jesy said on Sunday that her girls may never walk and that they may develop the most severe form of the disease, which eventually destroys the body’s muscles. As she said, “I am grieving a life I thought I was going to have with my children, I had to stop crying.”
SMA causes limb floppiness, breathing difficulties, swallowing, and motor skills that are delayed.
Jesy claims that her life has been turned around and that she is now treating her daughters to breathing aids and other chores that no mother should have to do.
We were told they would never be able to walk, Jesy said. They’d probably never be able to use their necks again. They will be disabled.
She continued, “The best thing we can do right now is to get them treated and hope for the best.” “I’m so grateful that the girls received the care they needed.” They would die if they didn’t have it.
Although there is no known treatment or cure for SMA, there are options for assisting people in achieving the best possible quality of life. If one in 40 children has a carrier gene for the condition, then the child is born with SMA.
Prior to 2019, SMA type 1 babies frequently couldn’t reach their second birthday, and type 2 babies had never been able to walk, needing to have multiple surgeries and suffer from respiratory infections. Treatments that stop the disease in its tracks have been approved in the last five years.
However, the tests must be started right away in life, or even within a few days. SMA testing is not done in UK babies because many times this diagnosis is late. Campaigners and senior experts are urging that to change.
Testing for all babies is due to begin in Scotland in 2026 under a two-year pilot programme. Portia Thorman, from SMA UK, believes it would be ”ethically wrong” not to introduce screening throughout the UK. “I think facing a diagnosis now, you can be filled with hope,” she says.
Jesy described how her life has changed in the past four months as “I am grieving a life I believed I was going to have with my kids.”
“It has become my second home,” I say. Within two weeks of receiving the diagnosis, I feel like I must start nursing. Nothing a mother should have to do to their child should have to do.
Because the last three months have been my life’s most heartbreaking experience, I made this video.
Jesy cried out, “I know I have to be grateful.” They are still present at the end of the day, which is their main goal. They have received treatment. My girls will fight the odds, and I firmly believe they will do so with the right assistance.”
Numerous famous people emailed her for support after posting her brave video. Chris Hughes, Jess’ ex-partner, once said, “A warrior Jess. Be gentle with yourself. Everyone is supporting you, so I’m sending my thoughts to you all.
Zion, Jesy’s partner, also shared his own hopeful message in a response to her proposal in September. The girls’ father, who claimed they were “smiling through the challenges,” shared a new photo of them. “Daddy loves you so much,” he continued.
After her girls were diagnosed with twin-to-twin transfusion syndrome (TTTS), Jesy had to go through a difficult pregnancy that required surgery. The NHS says that TTTS can have “grave consequences” for 10 to 15% of identical twins who share a placenta.
One twin has a larger blood volume than the other, which is caused by an abnormally connected blood vessel in the placenta, which causes an imbalanced blood flow between the two, leaving one with a larger blood volume.
Before giving birth to the twins prematurely at 31 weeks on May 15, the singer underwent an emergency procedure and spent 10 weeks in the hospital.
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.
Before the most recent health update, Jesy revealed she had previously recorded a six-part documentary about her pregnancy and what she called her “new chapter in her life.”
