A couple have revealed how their toddler was left paralysed in both legs overnight due to the same condition as Jesy Nelson’s twins.
And they’ve issued an urgent warning to the Little Mix star about what lies ahead.
Charlie and Tyler Brown were left “devastated” after their little girl, Dani-Rae, was diagnosed with spinal muscular atrophy (SMA).
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The condition, which causes progressive muscle weakness and wasting, has left the now four-year-old relying on a wheelchair.
On Monday, singer Jesy Nelson took to Instagram and shared the heartbreaking news that her twins, Ocean Jade and Story Monroe, had been diagnosed with the same condition.
Both Charlie, 29, and Tyler, 26, were “shocked” by the news; though they hope this attention will help to raise awareness, especially as an early diagnosis could’ve stopped the disease from taking hold.
“Our message to Jesy is that it will be okay – it’s not an easy road, and we would never pretend otherwise,” the dad, from Llanhilleth, Abertillery, told Need To Know.
“But all the little milestones will feel like winning the lottery over and over.
“The thing that needs to change is newborn screening, but also medical professionals’ knowledge of this condition.
“If diagnosed and treated early, life is very different; the disease is stopped before it even starts.
“Or at least it’s caught early enough.
“While we are angry about our delayed diagnosis, we’re more angry that it’s still happening to other families three years later.”
Dani-Rae was diagnosed on 15 November 2022.
She had initially experienced reduced movement in her legs “almost overnight” before losing feeling completely.
And since then, she’s been unable to move anything from the neck down.
There is no cure, and her condition could potentially become fatal if it spreads to the muscles surrounding major organs.
Charlie said: “We have been filled with stress, worry and fear about our little girl’s future for so long.
“The idea of losing her is devastating.
“When we first found out what was happening to Dani-Rae, we were so worried and frightened because all we saw on the internet were pages upon pages about kids not living past two years old.
“We’re doing whatever we can to get her life-saving treatment and want to raise awareness because the condition is so rare, so that other families know they are not alone.
“We had a very normal birth, and Dani-Rae was so lively, so it was very unexpected.
“We took her to the hospital, where she had blood tests and scans, but doctors couldn’t find anything wrong at first.
“She then went to a physiotherapist who spoke to us about their patients with SMA, but it’s so rare that not many medical professionals know about it.”
Following an MRI scan and referral to the neuromuscular department at Noah’s Ark ward in Cardiff, Dani-Rae’s parents received her devastating diagnosis.
The little girl suffers from type 1, the most severe type of SMA, which can sadly cause fatal respiratory failure in young children as the muscles around the lungs can’t cope with expansion.
There are treatments available to slow down the deterioration of muscles and give Dani-Rae a chance at independence, such as Zolgensma gene therapy.
Charlie added: “She will never be able to walk again, but we are going to try everything to give her the best chance possible of regaining as much movement back as she can.
“There are two types of treatment that could save her: gene therapy to hopefully stop further deterioration, and physio and hydro treatment to keep her muscles moving and hopefully build them up.
“We want her to have as much independence as possible.
“It’s heartbreaking to see her frustrated, and we want her to be able to do things for herself.
“We want to share our story with other parents.
“If you do think there is something wrong with your child, share your concerns with the doctor because SMA can be caught early on.”
