u/SlayerCharmed

Jesy posted:

”I'm really not sure where to start with this one...

All I can say is that I urge everyone to watch this documentary.

It's the most heartbreaking series I've ever had to make, but it's one that needed to be made if we're ever going to see real change.

This is only a small glimpse into what my girls have to go through every single day. It's the reality that so many children born with SMA have to endure and this is only the beginning of their lives.

I truly hope this helps people understand why the heel prick test and treatment from birth are so incredibly vital. Early diagnosis can change EVERYTHING.

I'll keep saying it until no family has to experience this again: no future babies born with SMA should have lives that look like this.

Please if you watch one thing, let it be this: "Jesy Nelson: Life Changing" on Prime Video streaming from July 17th”

“Yesterday, MPs debated my petition after more than 150,000 people signed in support of newborn screening for SMA.

Thank you to everyone who signed, shared and supported this campaign. Every single action helped bring this issue into Parliament and gave families affected by SMA a voice.

We've already achieved incredible progress: newborn screening for SMA is due to begin in October, giving babies the chance of earlier diagnosis, earlier treatment and a healthier future.

However, only 72% of babies in England will initially be covered. That means a baby's access to life-changing treatment could still depend on where they're born, and that simply isn't fair.

Every baby deserves the same chance, regardless of their postcode.

I'm now calling on James Murray MP, Secretary of State for Health and Social Care, and Sharon Hodgson MP,

Parliamentary Under-Secretary of State for Public Health and Prevention, to provide a clear timeline for when newborn SMA screening will reach 100% coverage across England and I'd welcome the opportunity to meet with ministers alongside SMA families to discuss the rollout and concerns raised during the debate.

Early diagnosis saves lives, prevents irreversible damage and gives children the best possible start. No parent should ever wonder if their child missed that chance simply because of where they were born.

Every baby deserves the same chance. Every life matters”

Jesy posted:

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 eg

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. l'Il 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!

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

However, Jesy will be at an exclusive premiere of 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

Jesy will be at Sheffield Docfest on 11 June. This will be an early screening before it is put onto Prime Video at a later date. Jesy will also be there to discuss the documentary and SMA.

Sheffield Docfest is the UK’s biggest documentary festival and is one of the top three documentary festivals in the world.

Description:

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.

Jesy Nelson is confirmed to be in attendance alongside the film's director, Clare Bradbury, to discuss the documentary.

Book tickets here: https://www.sheffdocfest.com/film/jesy-nelson-life-changing

jesys caption: Such a special day for the most special little girls 🥹 I'm so lucky I get to be your Muma. Happy 1st birthday my Ocean and Story bear. I love you more than you will ever know 🤍🤍

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.