JESY Nelson today shared an emotional update about her twins, months after their SMA diagnosis.
The former Little Mix star, 34, has been keeping fans up-to-date with how her daughters, Story and Ocean Jade, are doing as they battle Spinal Muscular Atrophy Type 1.
The tots’ devastating diagnosis is a genetic condition that weakens the muscles by damaging motor nerve cells in the spinal cord.
Today, Jesy shared a new update with fans where she revealed how Ocean and Story had tried eating in their specialised feeding chairs for the first time.
In the heartmelting moment, the singer could be seen feeding her daughters some fruit purée.
Speaking to Ocean as she gently spooned food into her little mouth, Jesy said:: “Excuse me, you’re supposed to eat it, not spit it out.”
She then turned her attention to Story, who was seen enjoying her dinner,
Jesy previously revealed how she got emotional when the special chairs arrived back in February.
“So the girls need special feeding chairs that came yesterday and I couldn’t help but burst into tears yesterday when I saw them,” she said at the time.
“It just made me feel so sad as it’s just another reminder of another obstacle we have to tackle.”
Meanwhile, Jesy’s latest update comes after she revealed last week how Story, who is just 11-months-old, had said the word “muma” for the first time.
SMA1 patients typically have limited or no spoken speech with communication usually made through eye movement and guttural sounds.
But Jesy’s baby girl is fighting against all odds, and managed to very clearly get out her first word, in a video posted on Instagram.
Story was wrapped up in a blanket, laying down on the sofa when she gave her mum quite the shock.
Jesy could be heard shouting with happiness: “Yeahhhhhh! Yesss clever girl.
“Storyyy good girl, you’re such a clever girl. Wow well done. Yeah do it again.”
The Boyz singer wrote the words, “Story said muma for the first time my life is complete,” over the top of the clip.
Jesy captioned the post: “My heart is so full.”
The star bravely revealed the twins SMA1 diagnosis back in January and has since been keeping fans updated on their battle via social media.
Both the girls have had feeding tubes fitted into their noses to clear their chests.
TV star Jesy has also shared some of the stretches she’s been doing with the girls to help strengthen their legs.
SMA1 leads to progressive muscle wasting, and if untreated, the life expectancy of a baby with the disease is just two years.
Jesy and her ex-fiancé Zion have been told it’s unlikely the girls will ever walk, and may face serious breathing and swallowing difficulties.
The 34-year-old has opened up on her hopes to use her platform – of over 10 million followers – to raise awareness of SMA1 and shine a light on the realities families face when caring for children with the condition.
Jesy previously said that if sharing her story helps even one other parent feel less alone, it will be worth it.
Spinal Muscular Atrophy: Signs and symptoms
Spinal muscular atrophy is a disease which takes away a person’s 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 faulty 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.