Latest news with #Down's
Wales Online
27-05-2025
- Entertainment
- Wales Online
Paralympian Ellie Simmonds opens up on feeling 'rejected' by birth mother over her disability
Paralympian Ellie Simmonds opens up on feeling 'rejected' by birth mother over her disability The Team GB swimmer from Swansea delves in to her adoption and whether or not she wants biological children in her new ITV documentary Ellie Simmonds with parents Megan and David with baby Cerys who was born with down's syndrome. (Image: ITV ) Former Team GB swimmer, Ellie Simmonds, has shared the heart-wrenching decision she's grappling with concerning whether to have children, confessing that she's "just not ready" for the emotional weight of the issue. The Paralympic champion was born in Derbyshire but grew up in Swansea from age 11 to make use of the region's excellent swimming facilities. Now 30, the five-time Paralympic gold winner, who hung up her goggles in 2021, is contemplating what life holds next. Ellie, who lives with achondroplasia, a common cause of dwarfism, finds herself at a crossroads about embarking on motherhood. She discussed the topic tonight, Tuesday, May 27, in her new ITV documentary, 'Ellie Simmonds: Should I Have Children?For the latest TV and showbiz gossip sign up to our newsletter . During her personal journey, Ellie discovers a distressing truth regarding her potential future pregnancies. If she were to conceive with a partner who also has dwarfism, there is a 25% risk their child could inherit a fatal 'double dose' of the condition. Ellie reflects deeply on this information, commenting: "No parent should have to go through that. While I'm not at the stage of wanting a baby just yet, it's something I will have to consider." You can read more about Ellie's baby dilemma here. Article continues below She said: "Being a 30-year-old woman, this is the time people think about starting a family. But my situation is different because I live with a disability, so I understand what it's like to be a disabled person. When people find out they're having a disabled baby, do they worry that they won't be able to cope? Are they nervous? Do they want a picture-perfect baby?" The documentary delved deep into the difficulties faced by prospective parents who are informed their child could have disabilities. Ellie met with different families who have children with disabilities. This included Rosie and Lloyd who learned that their son Arlo was going to be born with dwarfism during a 28-week scan and Megan and David, whose daughter Cerys has Down's syndrome. In the programme, the swimmer examined the array of choices before her, ranging from using sperm donors or freezing her eggs to considering adoption. Ellie is one of five adopted siblings and was adopted just ten days after her birth mother placed her for adoption upon finding out that she was disabled. Reconnecting two years ago while participating in the documentary, 'Finding My Secret Family', it wasn't until the creation of her new candid documentary that Ellie felt ready to discuss such a delicate subject with her birth mother. In the documentary, Ellie reflected on her feelings of being "given up" and being "rejected" because of her disability by her birth mother. She said: "I want to know what it was like for her to decide to put me up for adoption. For her it was 30 years ago, but it's quite a sensitive, super emotional situation." Her birth mother, who chose to remain anonymous during the interview, poured out her heartache: "It's really quite traumatic. It's hard for you to hear. "I don't want to in any way upset you. You're making a decision at the wrong time of your life, because you've just given birth, your hormones are all over the place. You're physically not right, you're mentally not right." She opened up about the daunting obstacles she faced back then, recounting: "There was a lot in the background going on. I kept the pregnancy a secret, I gave birth on my own. I went to a geneticist and she was very abrupt. She said: 'There you go, that's what your baby is going to look like'. I remember thinking I can't cope with this. Maybe I wanted a magic wand." Delving deeper into her personal turmoil, she elaborated: "All I could see was your disability. You can make excuses, but I really did struggle. "I grieved the child that I thought you should have been. It was the biggest decision of my life. To give your biological child away... it was momentous. I just handed you over and that's something you really can never get over. The guilt is horrendous. You live with it all the time." British paralympic gold and bronze medalist Ellie Simmonds poses with her medals after returning from the Rio 2016 Paralympic Games in Brazil (Image: AFP via Getty Images ) Acknowledging her unwavering thoughts about her child, she expressed: "I didn't ever forget you. I thought about you every day. When I saw you at the Beijing Paralympics, I thought 'That's my Ellie'. I've been a number one fan. "I've watched everything you've done, I'm extremely proud. It's an amazing thing to have a child, there's no love like it. Fast forward 30 years and I realise what a fabulous woman you are. It's just that you were a bit shorter. You're a completely perfect person in every way." As Ellie listened, overcome with emotion and largely silent, her birth mother continued to speak. Ellie eventually mustered the courage to say: "We don't want to blame anyone, decisions are decisions. You're amazing". Yet, her birth mother responded with raw honesty: "I don't know Ellie, I think sometimes it was quite cowardly to be honest." Article continues below Reflecting on their heartfelt exchange, Ellie observed: "It seems that she held that guilt for a long time. That's really sad. We put a lot of pressure on the mum in society. It's amazing that she's so honest and open. I think people's fear of a disability is actually a fear of what's inside of them."
Daily Record
05-05-2025
- Entertainment
- Daily Record
Charity's show garden will be relocated to Cumbernauld park following appearance at Chelsea Flower Show
After the event, which takes place on May 20-24, the display by Down's Syndrome Scotland will be moved to Palacerigg Country Park with the assistance of local charity Watch Us Grow, which works with adults who have additional support needs. A charity's show garden will be relocated to a park in Cumbernauld following its appearance at this year's Chelsea Flower Show. After the event, which takes place on May 20-24, the display by Down's Syndrome Scotland will be moved to Palacerigg Country Park with the assistance of local charity Watch Us Grow, which works with adults who have additional support needs. The new site for the show garden will be adjacent to the existing Watch Us Grow house and garden and was previously used for goat grazing. Designed by Nick Burton and Duncan Hall of Burton Hall Garden Design. the garden takes visitors on a journey through the life of someone with Down's syndrome and highlights their many unique qualities and barriers they face. Features of the garden will include a building created by Old School Fabrications in East Lothian. This was commissioned to feel comforting and reflect the compassion, kindness and joy that come naturally to many people with Down's syndrome. A ground-level water pools with submerged bridge will represent the difficulties often faced by people with Down's syndrome, expressing their resilience and determination. Durability will be symobolised by a Scots pine on the other side of the pool. The cause of Down's Syndrome is a third copy of chromosome 21. The design of the garden representes these numbers, with three water features and three seating areas, while bespoke benches by traditional craftsman Laurence McIntosh have three feet and 21 slats. Ceramic artist Frances Priest has provided 21 tiles and the garden will also feature a bunting display of 21 'odd, knitted socks', which resemble chromosomes, will be hung inside the garden building. North Lanarkshire Council will support the relocation project. The restorative justice team has begun preparing the site, and it will also work with the two charities to support its long-term maintenance and training of volunteers. The council will also use its communications resources to increase public awareness of the relocated garden and its launch event, in order to attract visitors. The show garden will also benefit from various recent improvements to the park itself, such as improved pathways, additional play areas and updated signage.
Telegraph
25-04-2025
- Entertainment
- Telegraph
Hamlet: Eight actors with Down's syndrome ‘play The Dane'
Luckily for them, some of the greatest modern actors of stage and screen – Derek Jacobi, Mark Rylance, Simon Russell Beale, Kenneth Branagh, Benedict Cumberbatch, David Tennant, Paapa Essiedu and Ben Whishaw – have never encountered what Uncle Monty in Withnail and I famously lamented was the most shattering experience in a young man's life: the crushing realisation that he will never 'play The Dane'. Yet that sense of acute thespian disillusionment which he so memorably articulated ('When that moment comes, one's ambition ceases') may not be foremost in the minds of Peruvian theatre company La Plaza's actors, all of whom have Down's syndrome and so face far greater challenges. Their highly lauded 're-invention' of Shakespeare's universally acclaimed tragedy arrives in London following a sell-out run at the Edinburgh International Festival last year. Under the aegis of director, writer and community stalwart Chela De Ferrari, this Hamlet involves eight actors performing key scenes from Shakespeare's magnum opus, while also sharing their thoughts, feelings, and frustrations, and all dextrously interwoven with apposite text from the original. In so doing, La Plaza skilfully combines the timeless rumination on life, death and existential angst with a passionate, profoundly moving and unexpectedly humorous meditation on otherness, liminality and what it means to be a perennial outsider, given how society often ignores, pities or mocks those with 47 chromosomes (as opposed to the standard 46) and habitually excludes, infantilises and patronises them. From the opening footage of a baby being born to mimicking Laurence Olivier perform his legendary film role and a video call with Shakespearean colossus Ian McKellen to get tips on how to play Hamlet, this production contains many transcendent truths. Whether asking what dreams they are allowed to have, asserting the desire 'to speak and be heard' or accepting the fact that they 'will never escape the gaze of others', this is a searing critique of societal attitudes to neurodivergence. Performed in Spanish with English surtitles, it is in turns humbling, audacious and – a much over-used but in this instance wholly merited epithet – gloriously life-affirming. A palpable sense of playfulness imbues the cast's performances. Uncompromising and unapologetic, Octavio Bernaza, Jaime Cruz, Lucas Demarchi, Manuel García, Diana Gutierrez, Cristina León Barandiarán, Ximena Rodríguez and Álvaro Toledo all shine brightly, passing the princely crown to each other with dignity and aplomb. The bare stage and minimal props only enhance the power and range of their acting. (The famous 'To be or not to be' soliloquy rapped with rage and rare insight.) So, banish any preconceptions. Infectiously exuberant, enriching and clever, this production serves as a reminder that Shakespeare is accessible to all, and Hamlet is for everyone. Uncle Monty would doubtless have wept with delight.
BBC News
24-04-2025
- Entertainment
- BBC News
Bath child model with Down's syndrome selected by Burberry
The parents of a seven-year-old boy who has Down's syndrome say his modelling success shows how children with the condition can do anything. Rio, from Bath in Somerset, is one of the faces of Burberry's Children's Summer 2025 campaign. He has previously modelled and appeared in adverts for several brands including Primark, Little Bird and is represented by inclusive modelling agency, Zebedee. Kimberley, his mum, said: "These kids can do amazing things, and it's not all doom and gloom; it's not scary; it's not something to be afraid of… they're just like everybody else and we just really want to tell and show everybody that." She added that Rio's diagnosis came as "quite a shock" and the family did not know much about the condition. "Every piece of information we were given, or were researching online, was really negative," she said. Along with Zebedee, Rio's family is striving to promote inclusivity in the fashion industry. "It's definitely improving, but it is something that all companies need to consider," Kimberley added that Rio may need adjustments when modelling, such as extra time to "get used to the camera" or additional instructions to help him."We just want to see more people with disabilities out there, whether it's Rio, or another model that has a disability or Down's syndrome, it's just really good to see that inclusivity," she said. Sue Moore, Rio's client manager from the modelling agency, said the inclusion of people with disabilities is "huge"."We've got a lot of high street clients that are booking our talent quite regularly, but it is still quite hard to break into the luxury market."It's important to people with disabilities, especially children, because when they see themselves on screen it can be life changing."They feel valued, they feel accepted and it's not only them themselves, but also their families."
BBC News
20-04-2025
- Health
- BBC News
Lucy Edwards: Why I want an IVF baby to screen out gene that made me go blind
Blind content creator and TikTok star Lucy Edwards says she's "so excited" to be on a health kick to undergo IVF for gene editing purposes, but reveals the dilemma she faced in deciding to screen out the very gene that made her blind."I'm so broody," the 29-year-old tells the BBC Access All and her husband Ollie married at Kew Gardens two years ago and are now ready to start a family - but there are complications to has the rare genetic condition Incontinentia Pigmenti (IP) and lost her sight due to this aged 17, just months after meeting condition runs through the female line - Lucy's mum has IP although isn't blind, her Grandma did too and her great-aunt was blind in one is totally blind, but, if she had been a boy, she may not have abnormal IP gene is located on the X chromosome. Women have two X chromosomes, while males have X and Y, meaning the appearance of the gene can be more catastrophic in male pregnancies."My grandma actually had nine miscarriages," Lucy is one of the facts that played into the complicated decision Lucy and Ollie made to opt for pre-implantation genetic testing, a special type of IVF where embryos are created outside of the body and screened for the genetic condition. Only those embryos which are not affected by the condition are placed back into the medical intervention, Lucy says there would be four potential outcomes to any pregnancy she carried: A healthy and unaffected boy or girl, an affected boy she would likely miscarry or who would be born with severe brain damage or an affected pauses, then laughs: "That sounds horrible, doesn't it? That's me." And that's the quandary. IVF will edit out the very thing that has made Lucy who she is today - a journalist, advocate, author and is an emotive topic of debate. The most well-known conversation is around Down's syndrome and the number of women who choose to abort a pregnancy once their baby is tested and diagnosed as having the condition. The question is around the value people place on other peoples' lives which may not look like our 2021 campaigner Heidi Crowter, who herself has Down's syndrome, challenged legislation allowing foetuses with the condition to be aborted up until birth. She took her case to the High Court arguing the rules were discriminatory to disabled people who could live a good life. She lost the case and the subsequent argument she made at the Court of Appeal. The European Court of Human Rights (ECHR) later rejected it as well, but Heidi continues to campaign to have the law is something Lucy is very aware of and she and her husband have spent a long time considering."It's understanding that it is removing that part of me that makes me, me," Lucy says. "It's such a personal decision and I know that I'm opening myself up for possible designer baby discussions, but I know I'm doing it for the right reasons." Lucy says first being diagnosed with IP and then losing her sight as a teenager were both traumatic events and she wants to minimise the likelihood of miscarriage to limit any future traumatic says she found it impossible to "knowingly" consider having a baby naturally once she knew the science was available to give a baby the healthiest start possible."If I had a baby and, unknowingly, I had a gorgeous, gorgeous baby with disabilities, I would be so thankful, so happy and amazed but knowingly having this gene? That's why we're having IVF."IP doesn't just cause blindness, it can also cause severe epilepsy and more difficult outcomes. Lucy says having the option to ensure complications were not passed on felt like both a responsibility and a privilege previous generations did not have."Whether we like it or not, we have to be responsible here. Maybe a responsible issue for you, if you have IP or another genetic disorder, is to have a child naturally and we are not judging you in any shape or form, this is just our decision."In response to their openness around this decision comments were overwhelmingly positive from Lucy's fans which she thinks might be because she is so "disability positive" in her everyday life - "I love being blind," she frequently Lucy says responses have been different around the world. When she was working in Japan and her content was reaching audiences unfamiliar with her story, she faced a lot more trolling."I got a lot of abusive comments that go into my spam filter questioning why I would be a mother," she says. "I know that I'm going to get a lot of abuse, but I'm just going to block them."I'm going to be OK. All I think about is the other mothers that have come before me who are competent, capable and resilient." Lucy, who is known for her How Does A Blind Girl... series of videos, is overjoyed by the prospect of IVF but she has also been frank about the fact she currently does not qualify, owing to her current weight, a sensitive element of IVF treatment that many keep to guidelines specify your Body Mass Index (BMI) must be 30 or under to qualify - a healthy BMI is considered to be between 18.5 and 24.9."I need to be a BMI of 30 and I'm very open that I need to lose 9kg," Lucy says. "I've already lost 15kg."Her health journey has involved swimming, lifting weights and many runs with Ollie tethered to her as her sighted guide. She has also found a love for batch cooking nutritious meals which she posts about on all of her channels on Instagram, TikTok and YouTube and the workarounds she has developed as a blind cook."I wanted a positive representation of losing weight online because it's all about this blinking jab," she says, referring to weight loss injections. "I just wanted to lose it healthily, have lots of nice food, talk about meal prep and just smile and run."Once she hits the required BMI, Lucy will qualify for three rounds of IVF on the will contact her consultant, after which she has to "spit in a cup" and offer up her DNA for genetic testing and a period of about three months, a genetics team will "make a bespoke test to find the gene within my eggs," Lucy Lucy will inject herself with trigger shots to stimulate the follicles within her ovaries to increase the number of eggs produced which will be retrieved, and then made into embryos with Ollie's embryos will then be tested so only ones without the IP gene will be possible candidates. Those embryos will be "shuffled about" so Lucy and Ollie don't know which will be selected in terms of gender or other genetic qualities, and implanted into Lucy, who will carry the baby to can't wait for the moment she holds her baby in her arms."It will never stop being a thing within my mind that this gene is being eradicated," she admits. "But I am very happy in my decision."A few days ago Lucy posted on Instagram, her cardigan tightened at the back with a hairband to make it smaller and fit."I've lost so much [weight] that my clothes are too loose now so we had to tie it up with a bobble," she tells her followers."Fingers crossed [we're] only a few weeks away from ringing the clinic."You can listen to Lucy Edwards on BBC Access All on BBC Sounds. Subscribe and email your thoughts to accessall@
