Jesy Nelson's Petition for Baby SMA Test Will Be Debated in UK Parliament

A petition started by singer Jesy Nelson to test all newborn babies for Spinal Muscular Atrophy (SMA) has reached over 100,000 signatures. Because of this, UK Parliament must now discuss the topic. Nelson started the petition after her twin daughters were diagnosed with the condition.
By Newsroom | Health, UK Politics |

A petition started by singer Jesy Nelson advocating for newborn screening for Spinal Muscular Atrophy (SMA) has surpassed 100,000 signatures. This achievement triggers a mandatory debate in the UK Parliament, marking a significant step in the campaign to include SMA testing in the standard newborn blood screening. Nelson, whose twin daughters were diagnosed with the condition, expressed emotional gratitude for the widespread support.

Campaign Momentum and Personal Stakes

The petition, titled "Review the evidence and fund the addition of SMA to the Newborn Screening Test," rapidly gathered momentum after its launch on Thursday morning. By Friday night, it had exceeded the 100,000-signature threshold. This critical milestone means the UK government is now obligated to respond, and the matter will be considered for debate by Members of Parliament (MPs).

Jesy Nelson in tears as SMA petition hits 100,000 signatures - 1

Nelson, 34, initiated the campaign following the diagnosis of her twin daughters, Ocean Jade and Story Monroe Nelson-Foster, with SMA Type 1. This rare genetic condition affects muscle weakness, movement, breathing, and swallowing. Nelson has spoken about the profound impact early detection could have had on her children, who were born prematurely at 31 weeks.

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"You have no idea how much this means to me and the SMA community." - Jesy Nelson

The urgency of the cause is underscored by the fact that current SMA screening is typically reserved for infants with a sibling already diagnosed with the condition. Nelson's petition argues for universal screening, aiming to provide all babies with the opportunity for early diagnosis, which can reportedly lead to a life with less severe disability.

Jesy Nelson in tears as SMA petition hits 100,000 signatures - 2

The Significance of 100,000 Signatures

The 100,000-signature mark is a pivotal point for any petition submitted to the UK Parliament. It automatically qualifies the proposal for a debate by MPs, ensuring that the issue receives formal parliamentary consideration. While petitions with over 10,000 signatures will prompt a government response, the higher threshold signifies a broader public consensus and a stronger call for legislative action.

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The petition website indicates that Parliament will consider this for a debate and that a debate date is pending. A government response is also expected, given the petition's popularity.

Jesy Nelson in tears as SMA petition hits 100,000 signatures - 3

SMA: A Closer Look at the Condition

Spinal Muscular Atrophy (SMA) is described by the NHS as a rare genetic disease that causes muscles to weaken and waste away. This can lead to problems with movement, breathing, and swallowing. SMA Type 1, the form diagnosed in Nelson's daughters, is the most severe type.

  • Symptoms of SMA can include:

  • Muscle weakness

  • Movement problems

  • Difficulties with breathing

  • Challenges with swallowing

  • Muscle tremors

  • Bone and joint issues

Regional Progress and Community Impact

While the petition targets a UK-wide policy change, Scotland has already committed to piloting SMA newborn screening this year. This regional initiative highlights a growing awareness and a proactive approach to addressing SMA in newborns.

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Jesy Nelson in tears as SMA petition hits 100,000 signatures - 4

The emotional weight of the campaign is palpable, with Nelson reportedly in tears upon reaching the signature goal. The support extends beyond Nelson herself, encompassing the wider SMA community who share the hope for earlier diagnoses and better outcomes for affected children.

"I want to tell Jesy Nelson, there's hope," says Newry mum.

One mother, Ann Reel, whose daughter Hollie was diagnosed with SMA at nearly five months old, shared her experience. She noted the significant improvements in her daughter's life with the use of a wheelchair and supportive equipment, suggesting that early intervention and ongoing support can lead to a more manageable quality of life.

Next Steps and Government Consideration

The petition's successful signature count means it is now on the parliamentary agenda for debate. The government is expected to issue a formal response, detailing its position and any potential actions regarding SMA screening. The timeline for this response and the scheduling of the parliamentary debate remain points of keen interest for the public and the SMA community.

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Nelson has met with Health Secretary Wes Streeting to discuss the potential benefits of early SMA detection. Her commitment to driving change and using her platform to raise awareness is a key driver of the campaign's current traction.

  • The petition's rapid rise to over 100,000 signatures compels a parliamentary debate on SMA newborn screening.

  • Jesy Nelson's personal experience with her twin daughters' diagnosis fuels the campaign's urgency and emotional resonance.

  • Early detection of SMA is posited as critical for improving quality of life and mitigating severe disability.

  • Scotland's commitment to piloting SMA screening indicates a broader trend towards increased awareness and testing.

Sources:

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Frequently Asked Questions

Q: What is Spinal Muscular Atrophy (SMA)?
SMA is a rare illness that makes muscles weak. It can make it hard to move, breathe, and swallow.
Q: Why did Jesy Nelson start this petition?
Jesy Nelson started the petition because her twin daughters were diagnosed with SMA. She wants all babies to be tested early.
Q: What happens now that the petition has 100,000 signatures?
The UK Parliament will now have a debate about testing babies for SMA. The government will also give an official answer.
Q: Is SMA testing happening anywhere else?
Yes, Scotland has already agreed to test some babies for SMA this year.
Q: Why is early testing important for SMA?
Early testing can help doctors treat the condition sooner. This can help children have a better life with less severe problems.