JESY NELSON has said that doctors dismissed her fears for her twin babies as they battle a devastating genetic disease.
She revealed her daughters Ocean Jade and Story Monroe have been diagnosed with the most severe form of a and could die before the age of two without treatment.
Jesy Nelson said doctors dismissed her concerns over her twin daughtersCredit: Instagram
Her mum Janice White noticed the girls were not showing as much movement in their legsCredit: Instagram
Ocean and Story have been diagnosed with a rare genetic disorderCredit: Instagram/JesyNelson
The former star, 34, at 31 weeks with partner Zion in May last year.
Jesy said her mum Janice White noticed there could be something wrong but it wasn’t a concern as doctors had previously told her not to compare their growth to other babies as they were born nine weeks early.
She explained: “A few months ago my mum noticed that the girls were not showing as much movement in their legs as they should be.
“It wasn’t really a concern to me at the time because from the minute I left NICU (Neonatal Intensive Care Unit), I was told ‘your babies are premature, so do not compare your babies to other babies.
“They won’t reach the same milestones, take them as they are and they will get where they need to be when they do’.”
The new mum was also reassured by health visitors, especially when the couple grew concerned about their feeding.
However, they were told the babies were “great and healthy” and there wasn’t anything to worry about.
After undergoing tests for months, Ocean and Story were eventually diagnosed with the severe muscular disease, called SMA Type 1.
The winner admitted it’s been “the most heartbreaking time of my life,” and her “whole life has done a 360.”
“I’m grieving a life I thought I was going to have with my children,” she emotionally said, before acknowledging that she is grateful to have them.
“I truly believe that my girls will defy all odds. And with the right help, they will fight this, and go on to do things that have never been done.”
Jesy has been inundated with support from celebrity pals as well as her loyal followers.
said: “I’m so sorry jesy what your going through ❤️xx sending love and strength to you and your beautiful girls xxx”
wrote: “My heart is breaking for the pain you are in right now. Sending so many prayers and love to your beautiful girls ♥️♥️”
also commented, telling Jesy: “Sending you so much love Jesy. Love & strength ❤️❤️❤️❤️❤️❤️❤️”
also noted: “Jesy I’m so sorry. I’m thinking of you and your girls and sending love ❤️❤️’
“Jes, There are no words big enough for how unfair and heartbreaking this is. I am so deeply sorry,” wrote I’m A Celeb star .
“My heart aches for you and for your beautiful little girls.
Spinal Muscular Atrophy: Signs and symptoms
Spinal muscular atrophy is a disease which takes away a persons strength and it causes problems by disrupting the motor nerve cells in the spinal cord.
This causes an individual to lose the ability to walk, eat and breathe.
There are four types of SMA – which are based on age.
- Type 1 is diagnosed within the first six months of life and is usually fatal.
- Type 2 is diagnosed after six months of age.
- Type 3 is diagnosed after 18 months of age and may require the individual to use a wheelchair.
- Type 4 is the rarest form of SMA and usually only surfaces in adulthood.
What are the symptoms?
The symptoms of SMA will depend on which type of condition you have.
But the following are the most common symptoms:
• Floppy or weak arms and legs
• Movement problems – such as difficulty sitting up, crawling or walking
• Twitching or shaking muscles
• Bone and joint problems – such as an unusually curved spine
• Swallowing problems
• Breathing difficulties
However, SMA does not affect a person’s intelligence and it does not cause learning disabilities.
How common is it?
The majority of the time a child can only be born with the condition if both of their parents have a fault gene which causes SMA.
Usually, the parent would not have the condition themselves – they would only act as a carrier.
Statistics show around 1 in every 40 to 60 people is a carrier of the gene which can cause SMA.
If two parents carry the faulty gene there is a 1 in 4 (25 per cent) chance their child will get Spinal muscular atrophy.
It affects around 1 in 11,000 babies.
She and partner Zion welcomed their babies prematurely at 31 weeksCredit: jesynelson/Instagram
She revealed the news in a heartbreaking videoCredit: Instagram
Eze Chidiebere Paul
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