{"id":31980,"date":"2021-03-22T13:10:01","date_gmt":"2021-03-22T13:10:01","guid":{"rendered":"https:\/\/www.sheffieldwire.co.uk\/?p=31980"},"modified":"2021-03-22T13:10:01","modified_gmt":"2021-03-22T13:10:01","slug":"nothing-to-be-sorry-about-here-meet-the-families-changing-the-narrative-around-down-syndrome","status":"publish","type":"post","link":"https:\/\/sheffieldwire.co.uk\/index.php\/2021\/03\/22\/nothing-to-be-sorry-about-here-meet-the-families-changing-the-narrative-around-down-syndrome\/","title":{"rendered":"“Nothing to be sorry about here”: Meet the families changing the narrative around Down Syndrome"},"content":{"rendered":"

Liam and Amos both have an extra chromosome. It’s just one of the many extraordinary things about them.<\/strong><\/p>\n

Liam Froggatt has so many social media accounts his mum can\u2019t keep up.<\/p>\n

He uses them to post about his hobbies: dancing, football, horse riding, and mountain biking, to name just a few.<\/p>\n

As well as these clubs, which have been side-lined during the pandemic, 16-year-old Liam has a purple belt in Taekwondo, and a modelling contract.<\/p>\n

He also has an extra chromosome.<\/p>\n

It hasn\u2019t been long since people with Down Syndrome were resigned to lives in care; in the 1960s they were institutionalised from birth, and while it\u2019s been an uphill battle away from that point, Liam\u2019s mum Lucinda says the family have never faced negativity as a result of Liam\u2019s condition.<\/p>\n

Positivity emanates from Liam and Lucinda as they fit a Zoom call into their busy Saturday evening, recalling how Liam has become an ambassador for Wouldn\u2019t Change A Thing, a charity which is doing away with old-school perceptions of Down Syndrome.<\/p>\n

In his new role, Liam will show the world that Down Syndrome doesn\u2019t have to be a barrier to achieving anything. Post-Covid, he hopes to continue walking runways at fashion shows, and will ride his favourite horse, Bailey, for team GB in the Special Olympics.<\/p>\n

\"\"<\/p>\n

Liam riding Bailey<\/strong><\/p>\n

 <\/p>\n

Lucinda feels people are very accepting of difference these days.<\/p>\n

\u201cWhen I was at school, if you wore glasses or a hearing aid or had braces, your life wasn\u2019t worth living. Now you\u2019d be the coolest kid on the block.<\/p>\n

\u201cHaving said that, we didn\u2019t have children with special needs in our schools.\u201d<\/p>\n

Something that seems universally acknowledged among the Down Syndrome community is that the positive shift in attitudes is largely down to representation – seeing people with Down Syndrome living their lives to the max.<\/p>\n

But what\u2019s the most\u00a0<\/em>important thing for people to know about the 40,000 people with Down Syndrome who live in the UK?<\/p>\n

\u201cI think, just give them the opportunity and let them have a go at things, and don\u2019t stereotype and say, well because they\u2019ve got Down Syndrome, they won\u2019t be able to do it.<\/p>\n

\u201cIf Liam has wanted to have a go at something, he\u2019d have a go at it. There\u2019s not much he hasn\u2019t done.\u201d<\/p>\n

\"\"<\/p>\n

Liam is an ambassador for Wouldn’t Change A Thing<\/strong><\/p>\n

 <\/p>\n

In the UK, there is a conflict between advocacy groups trying to change the conversation around Down Syndrome and a recent rollout of pre-natal NIPT testing, which screens a blood sample from a pregnant woman to test for a range of genetic conditions, including Down Syndrome.<\/p>\n

The tests are being offered free on the NHS to women with a higher chance of carrying a foetus with a chromosomal condition, but can also be accessed in private clinics.<\/p>\n

They are causing controversy in the Down Syndrome community, as many fear an increase in terminations and feel people with Down Syndrome have been left out of the conversation.<\/p>\n

Bess Popplewell didn\u2019t know her son, Amos, had Down Syndrome until four days after he was born. She can\u2019t imagine her family of four without him.<\/p>\n

Amos is five now, and runs into school every morning because he loves it so much, so excited he forgets to say goodbye.<\/p>\n

He\u2019s learning the names of his school friends and his teachers, and his big sister is his favourite person in the world.<\/p>\n

\u201cDown Syndrome has never been something we\u2019ve been afraid of, something we\u2019ve not wanted in Amos,\u201d Bess says.<\/p>\n

\"\"<\/p>\n

Amos with his dad<\/strong><\/p>\n

Bess is the treasurer at Sheffield Down Syndrome Support Group (SHEDS). In this voluntary role, she operates under the approach that \u201cIt\u2019s the unknown that\u2019s scary, not the Down Syndrome.\u201d<\/p>\n

\u201cDown Syndrome is seen as this big thing, and actually it\u2019s just a collection of different conditions that are more likely to occur if you have the extra chromosome.<\/p>\n

\u201cIt seems scary, but actually, it\u2019s the heart conditions and the respiratory problems and the sleep apnoea. The things that actually do occur in other people.\u201d<\/p>\n

\u201cActually it was when Amos was having epileptic seizures that I was like, I don\u2019t like this, this is not what I want. This is the bit that\u2019s upsetting me and hurting my child. <\/em>It\u2019s not the Down Syndrome.\u201d<\/p>\n

More positivity is needed to remedy the fear surrounding Down Syndrome, says Bess.<\/p>\n

\u201cAt Sheds, we want to get in touch with families from a really early stage and say hey, congratulations, you\u2019ve got a baby. <\/em><\/p>\n

\u201cBecause so often it depends on who\u2019s on duty when you get the diagnosis as to whether you\u2019re celebrated because you\u2019ve got a new baby who happens to have Down Syndrome or whether it\u2019s oh, I\u2019m sorry.<\/em> And there is nothing to be sorry about here.\u201d<\/p>\n

\u201cWe don’t gloss over the difficult bits at all. We understand there is a high chance your child will have heart surgery within a few days of being born.<\/p>\n

\u201cThere\u2019s no point in saying that’s not going to happen, but we also want to kind of share with families, especially newer families, that we’ve been there and we can support you and make it feel less scary.\u201d<\/p>\n

Bess doesn\u2019t want to dwell on the controversy surrounding the termination of pregnancies due to Down Syndrome, but notes her sadness at a recent Emmerdale storyline where a couple terminate a pregnancy after finding out the unborn child had the condition.<\/p>\n

The storyline was widely criticised and hailed as \u201cinsensitive\u201d by viewers at the time.<\/p>\n

Bess feels it was a missed opportunity to challenge an outdated message.<\/p>\n

\u201cHad they continued that pregnancy, they could have had an actor with Down Syndrome and that would have been really positive representation.<\/p>\n

\u201cThere definitely needs to be a call for these platforms to really think about the damage they can do.<\/p>\n

\u201cAnyway they\u2019ve done it now. There\u2019s nothing we can do to undo that. As a community, we\u2019ll just have to work a little bit harder to make that narrative positive.\u201d<\/p>\n

She\u2019s among other advocates currently fighting for termination rates to be in line with the national rate. Currently, foetuses with Down Syndrome can be terminated up to 40 weeks.<\/p>\n

Bess is used to people telling her they don\u2019t know how she does it, but advocating for Amos and others like him has become a \u201cpurpose.\u201d<\/p>\n

\u201cI don\u2019t sit at home thinking, gosh, I just want a day off advocating. <\/em><\/p>\n

\u201cEvery evening I just sit with Amos as he\u2019s going to sleep. And I\u2019m just like, actually, you\u2019ve given me a different life than I thought I would have, but it\u2019s not a bad life. <\/em>This life is really important.\u201d<\/p>\n

\u201cA child with Down Syndrome will bring so much to your family. Even if they can\u2019t talk or do what other children are doing, they bring so many other things.<\/p>\n

\u201cThey change your life. Even if it\u2019s only for a short while they change your outlook on life quite significantly.\u201d<\/p>\n

\"\"<\/p>\n","protected":false},"excerpt":{"rendered":"

Liam and Amos both have an extra chromosome. It’s just one of the many extraordinary things about them. Liam Froggatt has so many social media accounts his mum can\u2019t keep up. He uses them to post about his hobbies: dancing, football, horse riding, and mountain biking, to name just a few. As well as these […]<\/p>\n","protected":false},"author":21,"featured_media":32005,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"","_et_pb_old_content":"","_et_gb_content_width":"","footnotes":""},"categories":[46],"tags":[372,373,68,374,375],"class_list":["post-31980","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-long-reads","tag-covid","tag-down-syndrome","tag-health","tag-world-down-syndrome-day","tag-wouldnt-change-a-thing"],"yoast_head":"\n"Nothing to be sorry about here": Meet the families changing the narrative around Down Syndrome - Sheffield Wire<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/sheffieldwire.co.uk\/index.php\/2021\/03\/22\/nothing-to-be-sorry-about-here-meet-the-families-changing-the-narrative-around-down-syndrome\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\""Nothing to be sorry about here": Meet the families changing the narrative around Down Syndrome - Sheffield Wire\" \/>\n<meta property=\"og:description\" content=\"Liam and Amos both have an extra chromosome. 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