Spinal Muscular Atrophy: Newborn Screening Test

Sorcha Eastwood Excerpts

Monday 22nd June 2026 Westminster Hall

[Sorcha Eastwood (Lagan Valley) (Alliance)]

It a pleasure to serve under your chairmanship, Mr Mundell. I welcome the fact that we are having this debate. I do not know what to say, other than that if I was one of those amazing parents and advocates in the Public Gallery, I would be absolutely seething with rage, not because of the beautiful, cherished, much-loved and incredible children who have been born, but because we have determined that it will take a significant number of years to get in place something that already works, as evidence shows, and, more importantly, saves a child.

I want to talk about something a little wider than spinal muscular atrophy, because this could be any condition. I have written to the Minister about any number of childhood conditions, and the common factor—it is the same with SMA—is that we deem them not important enough. That is the message to the families behind me today—those incredible people who advocate so strongly, even when their hearts are breaking. We should not expect them to go through this. Whether it is SMA or childhood cancers, the theme is the same.

Back in January of this year, as a result of the incredible advocacy and work that Jesy did on behalf of her two beautiful children, Ocean and Story Monroe, I tabled an early-day motion that carried the support of 34 Members from across the House, which was really significant. The one thing that people wanted to say whenever they reached out to me—not just in Lagan Valley or Northern Ireland, but across the UK—was, “Enough is enough. We need to be heard. Our voices matter and our stories matter.”

I want to share some remarks from an incredible young woman I know from Northern Ireland. She is not my constituent, but if I did not say this, there is no way that she would forgive me. The incredible Michaela Hollywood is from Northern Ireland. She is not that young—I will not say her age, because she will shout at me—but she is living an incredible life. She says:

“Honestly, I won’t take a break until every family gets what they need. It’s a strange feeling this week: I’m glad we have the exposure we need to save babies but I also want the world to know life is just as rich and full if you can’t walk”.

Those powerful words from a long-term disability advocate and campaigner are at the heart of this as well.

The hon. Member for Sunderland Central (Lewis Atkinson) spoke about the emotional and psychological cost to families, and also about the long-term physical and other impacts. We work all the time on improving PEG feeding for families, and families feel that they have to bash down a door just to feed their children, but here we have an option sitting in front of us that is proven to work. It will save lives and, whether it will be 2030 or 2031, we do not need to waste extra time having a debate about whether it is worth doing. We agree that it is worth doing and that it saves lives; we just need to get on urgently and do it.