Jesy Nelson has revealed she’s ‘cried all day’ because her twins have to wear a spinal jacket and splints during the heatwave following their SMA diagnosis.
The singer, 35, revealed in January her 14-month-old twins, Ocean and Story, had been diagnosed with SMA Type 1.
Spinal Muscular Atrophy is a rare, inherited genetic disease that damages motor neurons in the spinal cord.
In a heartbreaking Instagram post on Friday, Jesy told fans her twins have to wear the jacket and splints to prevent deterioration.
She wrote: ‘I’ve cried all day. Imagine having to wear a spinal jacket and splints in this heat. I cannot even begin to tell you how much this breaks my heart into a million pieces.
‘But if I don’t put them in these every day, their spines and feet will only deteriorate and get worse.
‘These will never correct their spine or feet, it will only prevent it from getting any worse.
Jesy Nelson has revealed she’s ‘cried all day’ because her twins have to wear a spinal jacket and splints during the heatwave following their SMA diagnosis
The singer, 35, revealed in January her now one-year-old twins, Ocean and Story, had been diagnosed with SMA Type 1, a rare muscle-wasting condition
‘Once again, no future SMA babies need to suffer like this if they are given a heel prick test and treatment from birth!’
In June, Jesy shared she’d been left ‘heartbroken and outraged’ as she vowed to ‘keep on fighting’ after attending parliament for the MPs’ debate on SMA screening from birth.
Jesy headed to Parliament for a debate on whether a newborn screening for the disease would be rolled out across the whole of England.
Devastatingly, the result of the debate was not what Jesy and the SMA community had hoped for and as it stands only 72 per cent of the country will have access to newborn screening when it is introduced in October, while the other 28 per cent still won’t.
Leaving parliament Jesy fought back tears as she said: ‘I’m going to be completely honest, I was absolutely fuming. I feel so let down.
‘I have no more words. It’s sad. It’s so sad, like our children’s lives could look so different, and to know that we are still debating it. We are debating whether SMA future children should be disabled or not.
‘Based on where you live, how does that make sense? How is that fair? How is that fair?’
The parliamentary debate was prompted by a petition launched by Jesy, which gained more than 150,000 signatures.
The staggered roll out has been introduced under the advice of the UK National Screening Committee who want to evaluate the effectiveness of the screening and the cost to the NHS.
Among the areas that will miss out are Bristol, Cambridge, Leeds, Liverpool, Oxford and Portsmouth.
In a heartbreaking Instagram post on Friday, Jesy told fans her twins have to wear the jacket and splints to prevent deterioration
The trial will involve seven of the 13 testing laboratories available to the NHS.
Speaking in parliament, Sharon Hodgson said the remaining six laboratories ‘do not currently have the requisite equipment’ for testing. ‘If that changes, more labs could be included,’ she added.
Later Jesy addressed her followers over on Instagram as she reflected on the disappointment of the day and called out Sharon Hodgson, who is the Parliamentary Under-Secretary of State in the Department for Health and Social Care for the decision.
She told her viewers: ‘There is factual evidence that this treatment, if given from birth is completely life changing to a child that is diagnosed with SMA.
‘If it isn’t, and they get left untreated, there are facts that if your child doesn’t get treatment, they will not see their second birthday. They will die before the age of two. And there were families in that room yesterday that had children that have died from this horrendous disease.
‘And we had the Health Minister Sharon give her argument against why it should not be rolled across the whole of England.
‘So my question to Sharon is, if it’s safe enough for 72% of England to get this tested at birth, then why is it not good enough for the 28 per cent of England to not get tested at birth? How does that make any sense?
‘Her exact words were, “need to make sure that this does more good than harm.” Please tell me how that statement makes any sense.’
Jesy went on to explain that she spoke to Sharon after the debate and asked her whether she had ever met a child with SMA, to which Sharon said she hadn’t.
The singer then showed Sharon a video of sisters Maisie and Amelia, who both have SMA however one was treated from birth and the other wasn’t.
She explained that they have the exact same diagnosis but one is in a wheelchair but the other is running along, pulling her sister along.
Jesy continued: ‘When I showed her in this video, her exact words were, “wow, is that what the treatment does? Wow.” She was gobsmacked.’
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