Online trolls target mum after Jesy Nelson support

The mother of a four-year-old girl who has the same rare condition as former Little Mix's Jesy Nelson's twin daughters says she has been subjected to abusive comments online.

Sian Kennedy's daughter Sienna was diagnosed with spinal muscular atrophy (SMA), when she was six months old and has only just learnt how to sit up by herself.

Singer Nelson recently discovered her seven-month-old daughters also had the condition and would "probably never walk".

But when the mother from New Marske, near Redcar, showed her support for Nelson online, she said she received "disgusting" comments on the TikTok account where she shares her daughter's progress.

Kennedy said when she first saw the singer's video on social media she was "heartbroken for her", because it brought all the emotions back of a "very scary time" when Sienna was first diagnosed.

But posting online had "brought a lot of trolls out of the woodwork", she said.

"I have had horrible comments on there and laughing faces, which I've never had before," she said.

"I just think it's disgusting. It's already hard, and then to see those types of comments is just horrific.

"Why would you want to say horrible things about a child? That's what I can't get my head around."

SMA is a progressive muscle-wasting disease that can cause death within two years if untreated.

When Sienna was seven months old, she was treated with gene therapy drug Zolgensma, and her mother said she was now "doing amazingly" and had gained more control of her head and trunk, as well as strength in her arms.

According to the charity SMA UK, the drug delivers a healthy copy of the affected gene to the body, but timing is critical because irreversible damage might have already occurred in the nervous system.

Sienna still needs several machines to help keep her alive and healthy, including one to help her cough, a suction machine, an overnight ventilator and nebulisers.

Kennedy said if her daughter had been diagnosed earlier "all of this would not have been needed".

At present, screening for SMA is only carried out on those who have a sibling with the condition.

SMA UK wants the disease to be added to a blood spot test that already checks newborn babies for 10 rare but serious conditions.

Kennedy said: "The heel prick test costs just £5. If you think of how much money is put into the machines Sienna is now on, the hospital admissions, ambulances.

"How much money could have been saved from a heel prick test that costs £5?"

An NHS spokesperson said the UK National Screening Committee was looking at whether to introduce routine screening for SMA via a heel prick blood test.

"The NHS is supporting further evaluation to inform the Committee's decision," they said.

Kennedy said if she could speak to the former Little Mix singer, she would tell her "it does get easier".

She said: "You have to process so many emotions but there is light at the end of the tunnel.

"I look back at Sienna's videos, her progress, and hitting those milestones is the best feeling ever. Hang on in there, it does get better."

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