Jesy’s next documentary focused on SMA will have an early premiere at Sheffield Docfest on 11 June before it hits Amazon Prime Video at a later date. The title of the upcoming documentary is TBA, the doc is believed to be a 1 hour special.

Jesy will be at the Documentary festival and will have a conversation with the audience following the premiere.

Official blurb on the Sheffield Docfest website:

“A mother of twins diagnosed with Spinal Muscular Atrophy navigates her new reality while fighting to change UK newborn screening laws.

When Jesy Nelson's twin daughters were diagnosed with SMA type 1, her whole world changed overnight. This raw and powerful documentary follows Jesy as she comes to terms with what the diagnosis means for her girls, adapts to the everyday challenges of their conditions, and finds her footing as a single mother after the break up of her relationship. But this is far more than a personal story. Jesy channels her experience into a campaign to change how the UK screens newborns for the disease. It's a portrait of motherhood, resilience and the fierce determination that comes from knowing that a simple change in the system can save lives.”

Tickets are available tomorrow to the general public.

Edited June 11Jun 11 by Slayer

'HISTORIC' WIN Hundreds of children like Jesy Nelson’s to benefit from ‘life-changing’ drug for muscle-wasting condition

MEDICINES for babies with spinal muscular atrophy will be funded by the NHS for all patients for the first time.

Little Mix singer Jesy Nelson’s twins have the condition, also known as SMA.

It is a genetic disease causing nerve damage that prevents muscles from developing properly and causes lifelong disability.

NHS England said it will fund treatment for all new patients for their whole lives to help them live longer and attend school normally.

It comes after scientists this week revealed 750,000 more newborns in England will get heel-prick blood tests in a trial of routine testing for the condition, following the campaign by Nelson, 34.

Children diagnosed with SMA will be eligible for the drugs nusinersen or risdiplam, known as Spinraza or Evrysdi, which cost between £7,900 and £75,000 per dose.

The NHS has negotiated confidential lower prices and got watchdog approval to roll them out as routine treatments.

They work by increasing the amount of SMN protein in the body, which is too low in youngsters with the condition.

The health service said the medications can be “life-changing” when given quickly after diagnosis.

About 70 babies with the condition are born in the UK each year, meaning hundreds will benefit.

Most cases are diagnosed in babies or young children and it is vital for doctors to step in early to prevent or reduce disability.

Giles Lomax, chief of the charity SMA UK, said: “This is a historic moment for the SMA community.

“It follows many years of determined campaigning by patients, families, clinicians and charities.

“We know these treatments have helped many people maintain or improve muscle strength, respiratory health, independence and overall quality of life, while also reducing complications and care needs for some families.”

Professor James Palmer, from NHS England, added: “These lifeline treatments have offered a phenomenal step forward in care for children and families affected by such a debilitating condition.

“It is fantastic that they will now be available on the NHS in the long-term.

“For parents who faced the unimaginable pain of thinking their child would not reach their second birthday, they now have hope of seeing them walk to school and play with their friends, thanks to these life-changing new therapies on the NHS.”

Source: The Sun

This video got me 😭 happy birthday to the twins!

Jesy’s caption:

“I cannot believe it has been a whole year since having my beautiful baby girls. They have been through so much. There will never be enough words to describe just how incredible they actually are. My tiny little super humans. The strongest, most resilient little fighters I've ever known. You inspire me and every single person that ever meets you both.

One whole year old today what a mile stone to reach. I read this poem a little while ago by Emily Perl Kingsley "welcome to Holland" and I think this sums up their journey so beautifully.

Happy Birthday my Ocean and Story you are my whole heart and soul I love you more than you will ever know

Adapted from "Welcome to Holland" by Emily Perl Kingsley.

Original work by Emily Perl Kingsley.“

Officially going to be debated in parliament!

I hope that it becomes law to screen for it.

The production company behind Jesy’s previous documentary have announced “Jesy Nelson: Life Changing”, a documentary on SMA will be coming to Amazon Prime later in the year.

Jesy will be at an early premiere for the documentary next week on 11 June at Sheffield Docfest. She will take part in a panel after the premiere to talk about the documentary/SMA.

book tickets here:

https://tickets.sheffdocfest.com/schedule/69de61644cebc3dfee1dba2f

Edited June 3Jun 3 by Slayer

Jesy had the early screening of her documentary yesterday! It is coming to Amazon prime next month!

Big update:

“Hey guys, just wanted to update you all...

As you know, my petition to get SMA included in the newborn heel prick test has now reached over 150,000 signatures, which is honestly incredible. Thank you so much to every single person who has signed and shared it ba

We have had some amazing news that screening is due to start in October this year, which is a huge step forward!

But there's still a big problem... it will only cover 72% of England. That means some babies won't be screened simply because of where they live. A postcode lottery like that just isn't fair. Every baby deserves the same chance every babies life matters!

On Monday 22nd June, the petition will be debated by MPs in Parliament. I'll be there alongside Giles from SMA UK and we're hoping this debate will help push for screening to be available for every newborn across England.

We'll be arriving at 5pm on Monday, and it would mean so much to see as many of you there as possible. We'd love to get a photo together outside Parliament before we head inside

Please if you can, tag your MP in the comments and ask them to attend the debate and support universal newborn screening for SMA.

The areas currently missing out on screening are:

Bristol

Cambridge Portsmouth

Leeds

Liverpool

Oxford

No baby should miss out because of their postcode. Let's keep fighting until every newborn has the same opportunity. Thank you for standing with us every step of the way!”

Edited June 19Jun 19 by Slayer

Annoying the government refused to commit to screening all across England at this stage! How ridiculous.

Jesy had a segment on This Morning:

The full debate where Jesy was in attendance watching on:

Update:

part of new insta post -

Edited June 23Jun 23 by Slayer