Down’s Syndrome

Jen Craft Excerpts

Wednesday 19th March 2025 Westminster Hall

[Jen Craft (Thurrock) (Lab)]

It is an honour to serve under your chairship, Mr Turner. I congratulate the right hon. Member for Beverley and Holderness (Graham Stuart) on securing this important debate.

Down’s syndrome regression disorder is an aspect of Down’s syndrome that has been, until now, largely overlooked. It affects roughly 1% to 2% of people with Down’s syndrome and usually presents between the ages of 10 and 30. It is a truly horrific condition. People with Down’s syndrome regression disorder change, almost overnight. I met a mum whose son developed Down’s syndrome regression disorder. Overnight, he became non-responsive, uncommunicative and catatonic. She said it was like everything that was him had left.

Young people who previously held down jobs or voluntary positions, and had many interests, hobbies and a love of life, lose the ability to speak, lose continence and retreat into themselves. The change is not gradual; it is stark, unexpected and profound. There is a fundamental lack of awareness of the condition. It is often wrongly diagnosed as early-onset dementia or late-diagnosed autism, even though it does not fit the profile of either of those conditions. There is currently no pathway for diagnosis, and progress is often fraught. Finding a clinician who recognises the symptoms and will treat is, by and large, impossible. However, there is hope: 80% of people who receive the right treatment in a timely manner achieve some prospect of recovery.

I want to be clear: if a typical child who does not have Down’s syndrome stopped eating and taking any interest in jobs overnight, and if they suddenly became catatonic and completely unresponsive, it would be treated as a medical emergency. People whose children have Down’s syndrome, and who have finally managed to speak to the right clinician, have been told, “You need to take your child to A&E.” If it was a typical child, that would be happening, but because that child has Down’s syndrome, it is overlooked. Will the Minister meet with me and individuals affected by this disorder to discuss how we can best create awareness, and what their thoughts are on how we can create a pathway to diagnose and treat it?

I would also like to touch briefly on my reflections as a parent of a child with Down’s syndrome, and what I think would be generally helpful in the space. Many of us feel that some kind of pathway for parents whose child is born with Down’s syndrome would be extraordinarily useful. When their child is born, or when they receive an antenatal diagnosis, they very often think, “What lies ahead? What can I expect? What does my future look like?” Down’s syndrome is the most common chromosomal condition, and we know that 50% of children born with Down’s syndrome will have a heart condition, and there is a higher prevalence of conditions such as leukaemia. By and large, those with Down’s syndrome do not have a very strong immune system—as I know every flippin’ winter, when my child gets cold after cold.

I have had lovely responses and gained a level of knowledge about what to expect from various parts of my child’s condition. We have cobbled that together from speaking to other parents, through WhatsApp groups and Facebook groups, and sometimes from speaking to professionals and support groups. It would be helpful to have that set out officially, so that parents know what lies ahead, what to expect and what to look for.

This is a very small thing, but when people with Down’s syndrome have a fever, their temperature sometimes goes down rather than up. It is really unusual, but it is normal for the condition, and it is quite useful to know as a parent. It is also useful to know how to diagnose things, because people with Down’s syndrome do not present conditions typically, including conditions that can be really awful. Parents have lost children to sepsis because it does not present as it would with a typical child, so knowing how to diagnose it is really useful.

As people transition into adulthood and make those steps into the adult world, it is important to have an idea of how people with learning disabilities and Down’s syndrome can expect to be treated. What kind of things help them to live full and happy lives? As their parents and caregivers, what kind of things should we be encouraging them to take part in? That is extraordinarily helpful to know.

I will keep my speech brief, as I know other Members want to speak, but I will just end by reflecting that Friday is World Down Syndrome Day. In our community, we typically see it is a day of celebration, as well as an opportunity to present a challenge to policy makers. This year, we are asking them to ensure that we have the right support.

People will see this debate who have just received a diagnosis of Down’s syndrome. They might be receiving it today; they might be receiving it antenatally or postnatally. When I received that diagnosis seven years ago, it was a shock. I felt like the carpet had been pulled from under my feet, and I was devastated. I look back at that moment with shame at the thought that I was so devastated at the news of this person who became the beating heart of our family. She is joyous, although she is not always happy. That is a misconception—she is not—and if people say that, I will say, “Oh, did I get a wrong one?” Of course, I did not. She is stubborn—I like calling girls stubborn—she is determined, and she is feisty.

She is also a fantastic dancer. At a community event we went to, I was there as an MP, but she had me up dancing in the middle of the floor. I was not in the background; I was right there, and she dragged me into the heart of it. She is really funny, and she is so kind, especially with her sister. There is a really brilliant statistic that 95% of people who have a sibling with Down’s syndrome think that they have enhanced their life. She has made me a better person, and she has made my husband a better person. When she loves, she loves deeply, and she loves hard. People who meet her share that and feel that love with her.

The brilliant thing is that, if a parent has a child with Down’s syndrome, they join this wonderful community. I have met some of my best friends through that community and we are there to support each other. There are some brilliant groups; I will give a shoutout to Faye and Claire from our local Down’s syndrome group, who welcomed us with open arms and showed us what our life is. We are taking what we call the scenic route, not the quick path. It is a lot better than the casual straight line. Who wants normal? It is boring, and they showed us that joy.

Upwards with Downs in Harlow is a fantastic group that organises so many wonderful events, including a holiday we have been on with people who get it. There is also Downright Excellent in Hackney, and I say to my wonderful friends Charlotte and Kirsty: what a brilliant and fantastic community we have. Happy World Down Syndrome Day—I love all of you. If anyone is ever worried about what the future looks like, come and talk to me, or to any of us, because we can tell you that it is not just going to be okay; it is going to be brilliant.

[Several hon. Members rose—]