Jesy Nelson has been left ‘heartbroken and outraged’ as she vowed to ‘keep on fighting’ after attending parliament for the MPs’ debate on SMA screening from birth.
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.
And on Monday she 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.
Jesy Nelson has been left ‘heartbroken and outraged’ as she vowed to ‘keep on fighting’ in a recent Instagram video after disappointing MPs’ debate on SMA screening from birth
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
‘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.
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.
Fighting back tears she told followers: ‘I cannot tell you the outrage that I feel as a mother with two children who are suffering with SMA type one, this awful disease’
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
Jesy continued: ‘When I showed her in this video, her exact words were, “wow, is that what the treatment does? Wow.” She was gobsmacked.’
Fighting back tears she continued: ‘I cannot tell you the outrage that I feel as a mother with two children who are suffering with SMA type one, this awful disease. How heartbreaking it is to hear someone try and argue against why children with SMA, future children with SMA, should be denied of this.
‘You are basically telling me that if you live in a certain postcode, you’re not as important as the other 72% of England. Your life doesn’t matter as much. It’s outrageous.
‘I cannot believe that we are still debating this. We are debating whether future SMA babies deserve to live or die, deserve to be disabled or not, how are we?
‘How are we justified in that, and I guess my question to Sharon is when are we going to make sure that this is rolled out? When are we going to have a timeline, so that no baby is missed, no baby has to suffer every day with this disease when they don’t need to.
‘You know what’s mad, Sharon’s got children, and I’m pretty sure that if Sharon’s children had this disease, she would be doing everything in her power to make sure that this was rolled out across the whole of England, but the problem is that these people, they go home once they close their door, it doesn’t affect them.
‘But me and many other families and children are affected by this every single day, not only physically but mentally, and I cannot tell you how heartbreaking it is to know that my children’s lives could have looked completely different.
They could have been walking by now. They didn’t have to be on breathing machines, they didn’t have to have coughing machines. I have to give them medicine every four hours, I have to turn them every two hours, because they can’t do that themselves. I have to make sure they’re not choking.
I have to watch them so closely to make sure that they don’t choke on their own saliva, because this disease has affected their muscles with their swallowing and to know that there are people that are literally making this decision to make children suffer. I have no words.
She concluded: ‘When are we going to get answers? And when is this going to change? Because this cannot go on.’
Elsewhere during the debate Amanda Martin, MP for Portsmouth North asked: ‘We need to ask the Government why babies born in Portsmouth matter less than babies born in other parts of the country?’
Meanwhile Ruth Jones, MP for Newport West and Islwyn, questioned why the UK was falling behind while Ukraine had managed to begin newborn screening for SMA ‘during a war’.
