Latest news with #disabilityawareness
BBC News
23-07-2025
- Health
- BBC News
Girl, 7, wants others to see there is life after amputation
Seven year old River-Lucia is running around the garden of her Cheadle home, dashing up the steps of a slide and coming down the other side again and Leia watches proudly. She regularly films her daughter for their Instagram page, rushing up and down stairs, bouncing on trampolines, paddling in the Instagram River-Lucia is the fibular hemimelia warrior - the condition which ten months ago led to her left leg being removed below the since, and she and her mum have been trying to show others in a similar situation that life, although challenging, can be active and fun. Fibular hemimelia means one of the two bones in the lower leg, the fibula, is either shorter than normal or missing altogether, causing one leg to be shorter than the are born with the condition – in River-Lucia's case, Leia was told during her 20 week scan."In this world we are all born different. We all look different," said LeiaShe added: "Parents might find it hard to understand and think that the child's going to be treated different or not able to fit in a mainstream school. "They can and looking at River-Lucia's page you can see she's just normal like any other kid. She's just doing what they do." In Greater Manchester parents like Leia are usually referred to the Specialised Ability Centre in Wythenshawe before their child is even born. It is one of the biggest centres in the country offering both prosthetic (artificial) limbs and external support for existing limbs like built up shoes and most of their patients are adults, the centre does see around 150 children a year, who will stay within their services for the rest of their lives. Lara Littler, centre manager, said: "We see patients at pre-natal, we see expectant mothers…and then right after the child is born they will be seen by us and we will support that family through the emotional side, the physical side, the development aspects, all the way through." Staff also talk over the different options for each River-Lucia's case, the increasing difference in length could only be treated by multiple leg lengthening surgeries, which involve wearing an external cage for months and can lead to serious complications, or an amputation. "It was the most difficult decision of our lives," said Leia."We could have done it earlier when she was a baby but we held back as we wanted to see how her foot would grow""We waited until she was at an age to understand it all, showed her pictures, introduced her to other children…and when we showed River-Lucia the two options, she said "amputation" straight away"Last September, when she was six-years-old, River-Lucia had the lower part of her leg removed."It was such a shock. You can prepare yourself all you like but until you're actually there, it was all questions going on in my head, I couldn't sleep, it was 'are we making the right decision? are we going to regret this?'" said Leia. Shannon Hughes is a prosthetist, a specialist in all aspects of prosthetic limbs, who often works with children. She says anxiety over children undergoing amputation can be overwhelming for all concerned"It's really important that you involve the child and let them know that they get to make decisions too, but often you're working alongside the whole family, " she said."I think there's often a lot more anxiety around children….not knowing the future is kind of scary for most parents, but if you don't know anyone else who has a limb absence like your child then it's hard to know what the future might look like".Leia said her own daughter's limb amputation has been transformational – for the better. Her prosthetic limb has allowed her to be active in a way that external supports, like built up shoes, could not."You just saw her character come out…..She's got so much more confidence, she's not at my side anymore, she's not needing me for help. She must just feel so much more confident in this leg" Leia now hopes their Instagram account will help other families dealing with the news that a child might have to lose a asked what her favourite things are, River Lucia says: "Swimming, climbing, riding my bike, and running". Her prosthetic limb is covered with pictures of lions, for courage. Her bedroom, like much of the house, is filled with affirmative posters and ornaments. Many of her toys and dolls wear a prosthesis."We do have struggles at home getting from A-B and sometimes we do need the wheelchair. But eight times out of 10 she's doing what other kids can do," Leia said."It feels good because we know we've made the right decision….She's just giving it her all. Everything she's doing, she's just giving it her all". Listen to the best of BBC Radio Manchester on Sounds and follow BBC Manchester on Facebook, X, and Instagram. You can also send story ideas via Whatsapp to 0808 100 2230.
CBC
16-07-2025
- Entertainment
- CBC
Dartmouth man's clothing brand spreads disability awareness
Cody Rodgers was born with muscular dystrophy. It's a challenge he's faced his whole life, but it's not something that limits him. He started Wheelife clothing, a brand that helps spread awareness for people with disabilities.
News.com.au
09-07-2025
- Health
- News.com.au
Teen told it's ‘all in her head' before receiving devastating diagnoses
At just 19 years old, Sydney's teen Marissa De Santis spends most of her days in and out of the hospital, fainting up to five times a day, frequently seizing and battling chronic pain so intense it's left her bedridden for weeks. But despite her debilitating symptoms, doctors still dismiss her, telling her she 'looks fine' and sending her home. Marissa has Functional Neurological Disorder (FND), a complex and poorly understood condition that disrupts how the brain communicates with the body. FND affects movement, sensation, and even organ function — yet many medical professionals know little about it, and there's no cure. 'I just want to be independent,' Marissa told 'People have no idea what it is. They look at me and think I look fine.' Marissa's symptoms started in high school. She struggled to concentrate, felt constantly sick, and was often sent home vomiting or in pain. In 2022, she managed to graduate, but months later her health took a steep dive. She developed Postural Orthostatic Tachycardia Syndrome (POTS) that left her fainting every time she stood, sometimes collapsing on the stairs or in the shower. She's had seizures that left her shaking violently on the floor, with her two most recent ones on Monday. For five weeks earlier this year she was completely bedridden, unable to stand without passing out. She's since been admitted to hospital for a week at a time — but doctors usually just check her vitals, give her some pain medication and send her home. 'No one really knows what to do,' she said. 'I've had so many tests, they all come back fine.' And that's the kicker; People with FND do appear 'fine' on paper, but inside, their body is fighting for its life. After seeing doctor after doctor and being told it was all in her head or it was 'just anxiety', Marissa began to lose hope. 'My body was shutting down, and I was overwhelmed and exhausted beyond words. 'Then one afternoon, everything changed — my body started shaking violently. I lost control. I had a full-body seizure. My eyes locked shut. I couldn't speak, move, or cry for help. 'That was the moment I knew — this wasn't just anxiety. It was real.' Marissa's younger sister Helena, now 17, was diagnosed with FND at just 14. Helena also collapses, suffers seizures and lives with chronic pain, though Marissa's condition is more severe. Their mother Sylvia said that although it hasn't made it any easier, she was able to recognise Marissa's symptoms earlier. 'It's just heartbreaking,' said Sylvia. 'I want them to be better. There's no help, there's no answers, it's so frustrating.' 'Marissa should be worrying about who she's going to party with, not whether she can stand in the shower.' 'I just research and push doctors to listen. But I can no longer work or provide,' she said tearfully. Sylvia has had to quit working for their family's dog grooming business to take on the role of full-time carer in her home. 'We may need to look at selling our house. It's a constant battle,' she says tearfully. The family spends tens of thousands of dollars every year on weekly psychologists, fortnightly psychiatrists, cardiologists, neurologists, pain specialists, rehabilitation programs and even hypnotherapy. Marissa is also taking over 10 medications to help manage her condition, including for her heart and seizures. Earlier this year, Marissa was also diagnosed with autism level 2. Her care team believes autism contributed to her nervous system 'overloading,' triggering the FND. Marissa's autism diagnosis has meant the family now has access to minimal NDIS support but FND and POTS are yet to be recognised on their own. Recently, Marissa's family surprised her with a visit from a service dog named Moose. 'When Moose visited Marissa, her heart rate dropped drastically,' said her mum. Moose carries a hefty fee of $30,000 but will allow Marissa to regain a sense of independence and a better quality of life. He will be able to notify her of oncoming seizures or fainting spells. He will also be able to press a doorbell that sends an alert in case of emergencies and assist Marissa in learning how to walk again using his walking frame. Marissa has bravely spoken out about her condition for the first time, creating a GoFundMe to raise money to have access to Moose, who she says would be a lifeline. 'With a Moose by my side, I could reclaim parts of my life that I've lost — and maybe even feel safe enough to go outside on my own again,' she said. Marissa says all she wants is a bit of awareness about what she's going through. 'People have no idea what it is, but disabilities can be invisible. People often make a quick judgement but you can't tell what's going on inside someone's head.'
BBC News
08-07-2025
- Sport
- BBC News
Wheelchair rugby coach takes on Marvel triathlon at Dorney Lake
A wheelchair rugby coach will be dressed as Captain Marvel as she takes on the most difficult challenge available at a sports event for people with Sycha, 40, from Wokingham, Berkshire, will take on the full Superhero Tri at Dorney Lake, near Windsor, in conditions left the mum-of-two needing a wheelchair weeks into her second pregnancy as she could collapse after standing for a couple of coach at the Berkshire Banshees wheelchair rugby club said it was tough to adjust initially but that she now has the "confidence" to celebrate who she is. "In the early days, I wasn't comfortable being disabled, I wasn't comfortable being seen. "I didn't feel I had a place in the world any more so my first wheelchair was all black. I tried not to be seen," she said."Now I'm not trying to be hidden. I am colourful and I am seen and have a right to be in the world. "I have that confidence that I didn't to begin with."She takes on the event's full challenge - a 750m swim, a 20km (12.4-mile) bike ride and a 5km (3.1-mile) push/run - having completed shorter challenges in previous of people are expected to attend the event dressed as their favourite by Marvel, the event on 16 August will be the Superhero Tri's ninth faces at 2024's event included comedian and presenter Adam Hills and Paralympic equestrian gold medallist Sophie Christiansen. You can follow BBC Berkshire on Facebook and X.
News.com.au
05-07-2025
- General
- News.com.au
Aussie woman's broken hand sparked huge beauty business
A woman who broke her hand and was left crying on the floor because she couldn't do her makeup has launched her own line of beauty accessories to help others. Storm Menzies has mild cerebral palsy, saying she has always lived with 'very few barriers' and has been able to adapt to living life with the use of one hand. But, when the 30-year-old broke her dominant hand in 2023 it made her realise 'how bad' her right side was. In that moment, she finally understood how much she'd been overcompensating. 'You normalise your struggles, so it just becomes your everyday,' she told Initially, she didn't think much of her broken hand. She was getting ready to go out one day, and tried to put makeup on, and she realised how difficult the task actually was. 'It was this moment of, 'Oh my god, how am I going to do this'. Everything else, I could find a workaround but you need a lot of dexterity to apply makeup,' she said. 'There was a tube of mascara and I couldn't pick it up from my makeup bag. I eventually managed to manouver it out, had it open and in my mouth and there was mascara everywhere. I couldn't put it on. It was so hard.' She sat on her bathroom floor and cried, wondering how she'd leave the house for three months without makeup. So, she started to Google accessible makeup. She couldn't find a single thing — bar one business that didn't ship to Australia at the time. Ms Menzies was confused, thinking maybe she was searching the wrong terms. She called a friend, who is also disabled and always looks immaculate, according to the Newcastle-based woman. She wanted to know how she did her own makeup. 'With great difficulty, why?,' her friend responded. Her friend said it sucked, often needing the help of a support worker. Ms Menzies was stunned, thinking she was about to give her a boatload of information on accessible beauty options. 'She said, 'Storm, makeup isn't made for people like me. Why would it be? No one thinks we're beautiful.' That moment, I realised it wasn't about the physical accessibility of makeup but what not having accessible makeup meant,' she said. 'There was also a mix of shame of having a disability and being 'lucky' for it not affecting me, and I worked in the disability sector for a long time and never asked.' Ms Menzies decided to fix this problem herself, and ByStorm Beauty was born. Initially, she started with the idea of creating accessible makeup. She bought some modelling clay and attached it to her makeup. She said she needed more surface area to grip with, and she was thrilled that the attachment helped. The young woman did a survey of 100 people with disabilities to discover what their beauty needs actually were. 'One of the resounding things that came through was people just wanted to use the same products, they didn't want to have 'special' makeup,' she said. 'Which wasn't what I was thinking.' So, she printed some 3D designs that essentially work as attachments to already existing makeup products. Ms Menzies noted it was lucky that a lot of makeup was cylindrical, and so far has made two attachments - a ball shape and a paddle shape, to help cover as many needs as possible. She said it's the 'coolest thing' to watch people use the products for their different needs. For instance, a male friend who was injured in a sporting accident who can now paint his daughter's nails with the help of her accessories. She commented that there have been some trolls, but she said in her mind it comes from a place of not seeing people with disabilities in spaces such as this before. She said more often than not, disability is portrayed in an incredible infantilising way — and her brand is bucking that trend. The big goal for Ms Menzies is to not only land in stores such as Mecca — as well as offering training to help staff cater to people with disability — but also prompt other brands to follow suit when it comes to inclusivity. And the brand sure is starting to take off; she's already got a supporter in Australian comedian Celeste Barber. Ms Menzies contacted Barber's brand BOOIE about a partnership and she replied instantly. 'I've been rejected by so many investors, I can't even count. But I sent her my pitch deck,' she said. 'She literally said to me, 'Holy f***ing sh*t balls, I was trying to make my products accessible and I thought accessibly priced but I never thought about how people use the products. I feel like such a d***.' 'I never expected her to reply,' the beauty founder admitted. Now, BOOIE is selling Ms Menzies' products in its signature colours on their website. Ms Menzies said it was the dream outcome. 'It's all I ever wanted to do,' she said.
