Truly

27-YEAR-OLD Alexandra was born with a rare genetic condition called Williams syndrome, which makes her one of the most friendly people you can come across. Alexandra describes the condition as "kind of like Down's syndrome, but we're missing chromosome seven." While the condition affects people differently, older sister Victoria identifies many of the classic traits in Alexandra: "It's characterised by cognitive and developmental issues, highly sociable personalities, an affinity for music [and] similar facial features" - including "starburst-blue eyes." The two sisters are inseparable, spending every day together - and Victoria insists that "it doesn't feel tiring to match her happy energy - she's always been that way, it's always been a consistent in my life." But she is very protective of her sister, as Alexandra's highly sociable tendencies meant that she used to "wander off and just give anybody a hug." This was something that Victoria had to teach her not to do, out of concern that "not everyone is friendly, not everyone has good intentions." Alexandra's zest for life is still as strong as ever though - and she has found a passion for clothing and fashion. In recent years the sisters have developed an online business selling clothing that they design and make together - and Alexandra takes the lead creatively: "All of the designs have been Alexandra-approved before they go on the website." Their items are often emblazoned with mottos that Alexandra resonates with - such as "Stay Weird" and "Normal Is Boring" - and Alexandra models every item herself. The sisters donate a percentage of the profits they make to the Williams Syndrome Association, a charity that has introduced Alexandra to other young people living with Williams syndrome "all over the world" - close friends she now talks to every day without fail over video call. Despite the connections Alexandra has made, Williams syndrome is so rare that the sisters have felt it important to use their social media channels to educate on what living with Williams syndrome looks like. They post regularly to Instagram and TikTok - despite Victoria initially feeling very cautious about exposing her sister to negativity. Her fears were realised when she saw trolls "make comments about my sister" - something that did "irk" her in the beginning - but Alexandra's defiant positivity has enabled them to create "platforms where there is love." In doing so, Victoria has been able to "see things from [Alexandra's] point of view" and the two sisters are closer than ever. Alexandra knows she has a best friend and staunch ally in Victoria - and the two sisters are out to remind us all that "you should be happy with what makes you unique, because normal is really boring." Follow Alexandra & Victoria on Instagram: https://www.instagram.com/the.birch.family Follow Alexandra & Victoria on YouTube: https://youtube.com/thebirchfamily Follow Alexandra & Victoria on Facebook: https://www.facebook.com/thebirchfamilyy Follow Alexandra & Victoria on TikTok: https://www.tiktok.com/@thebirchfamilyy

KATY and Rob were previously featured on Love Don't Judge, speaking about the criticism they faced for being in an open marriage, where Rob also worked as an adult performer. Since filming the show their partnership has evolved. They are now in a relationship with Will and Dee, who starred in their own LDJ episode, speaking about their unconventional lives together as swingers. Explaining the changes since their last episode Dee said: "We became polyamorous after filming with Love Don't Judge. We sleep with Katy separately, we sleep with Rob separately, we sleep with them together." She continued: "It's easy, it's comfortable and it's best friends." Katy agreed: "When we met Will and Dee the relationship flowed from the start. It was the first swinging couple we engaged with." The group now films their intimate lives for the world to watch. "The content can range from educational purposes, like how to go d** on a girl, how to give a good kiss. As well as enjoying the spicy content we all do together," Katy said. "We are swinging anyway, so why not film it and make some money off it," Rob joked. But their life choices have been picked apart online. Comments include: 'This is so disgusting and disturbing!', 'People think swinging is a civilized way of cheating', and 'You could have health problems from so many partners at the same time.' However, the group brushed off the naysayers, "Some people like to be accountants, some people like to be p** stars," Will said. "Just keep having fun, I know what makes me happy and that's what I choose to do every day," Rob agreed.

THIS COUPLE has stirred controversy on TikTok after posting videos of them together, with people questioning the authenticity of their relationship. Will and Katiana, from Arizona, met on a dating app four years ago and have been dating ever since. Describing themselves as 'comedy content creators', the duo have been working together to build their social media business while travelling across the country. They have amassed over three million followers on TikTok after they started sharing humorous videos of themselves. They have also been flooded with comments from people who claim that Katiana is 'too hot' for Will and he must be 'rich or packing' to be dating her. Some have even gone to extremes, accusing Will of 'kidnapping' his girlfriend. But the couple seems to be unbothered by people's reactions. Will said: "Growing up, I felt like everyone I was around was super judgy so I got to develop a thicker skin, really just not caring about what other people say."

EVELYN first met Tom when they were just 16 years old. After losing touch for several years, the pair soon came back together and got married. Although their relationship looks normal to any outsider, Evelyn has a condition she has always used to her advantage. Evelyn told Truly: "I have two uteruses, one is for my husband and one is for work. That's my unique selling point for Only Fans." She was born with a rare condition known as ‘Uterus Didelphys’, meaning she was born with two vaginas which are each connected to their own cervix as well as one ovary on each set. She explained that: "It has impacted my dating life because it's always a bit of an experimentation to try and figure out what feels good." Although the diagnosis initially made her anxious, Evelyn decided to empower herself by playing on people's curiosity and decided to make money out of it. Now Tom has joined his wife on OnlyFans, which has caused a rift in their lives. He explained: "I quit my job as an electrician after 12 years to join Evelyn on her OnlyFans. We received quite a bit of judgement from family not really understanding the industry." They have received a lot of criticism online too, after sharing their story. Evelyn said that trolls "can say some really nasty comments, judging me as a mother, putting me down, calling me a s***." However, she tries to focus on the important things in her life, rather than think about these critiques. "The judgement makes me feel upset for those people to be honest, that they must be so unhappy to comment on my life, I am so happy with my family I just don't really let it get to me that much."

TAYLOR Tate, 30, from California, dons an androgynous look which she describes as 'predominantly masculine'. Tay's look developed after she had a 'strict, religious upbringing' in the south of America. Tay told Transformed: "I grew up in the south. A bible belt area and that played into me really figuring out who I was with my sexuality, it was really difficult to express myself. I had to wear feminine clothes and wear things that made me uncomfortable." Now that Tay lives in California, she has found her style and who she really is; which is something her girlfriend Zashia adores about her. Today, with the help of makeup artist Jaycee, Tay is surprising Zashia by stepping out of her comfort zone and transforming into a 'super feminine' look for date night. Zashia has never seen Tay like this before, so will be in for the shock of her life... Will Tay begin to embrace her more feminine side after the transformation? Or will she long for her androgynous look to return? Follow Tay: https://www.instagram.com/taytate12/ https://www.tiktok.com/@taytate12?lang=en Follow Makeup Artist Jaycee: https://www.instagram.com/jaycee.beauty/

THE DUARTES are XL bully breeders hailing from California. Parents Wayne and Johanna share their home with their three kids; Sherlene, Selena and Samuel, as well as their beloved breeding bullies; Hussle, Choko and Athena. They pride themselves on being a family focused breeder and their business social media pages are plastered with photos and videos of their tiny children interacting with their large, powerful dogs. Wayne admits: “bullies are very strong, and in the hands of the wrong person just like any dog they can do damage," but asserts that his own dogs are harmless. The family have encountered a lot of judgement online with people saying bullies are “dangerous animals bred to kill” and “I wouldn’t trust one like that around my kids for all the tea in China”. Wayne responds: “I trust my dog to take care of my kid more than I would a human being," and expresses his controversial theory that many of the XL bully attacks that make the news are “probably not pure breed bullies, it’s probably just a mix”. With the recent UK breed ban hot on everyone's minds, the family worry about the future of the breed and advocate for keeping it legal. They’ve already convinced Wayne’s dad who was initially sceptical, and the Duartes won’t stop trying to persuade the masses that the bully breed are really just gentle giants. Follow the Duarte’s here: https://www.instagram.com/kali_familia_kennels2/ https://www.tiktok.com/@kali_familia_kennels?lang=en

Join us as we follow the lives of four women who are affected by alopecia.

LUCY, aka Lucy Aura, lives in a tent in the Australian rainforest with her two kids, seven-year-old Alana and five-year-old Asa. Despite the judgement she’s faced for her alternative lifestyle and parenting, Lucy says she’s “just being really comfortable with my choices, you may call me homeless but I’m at home with myself." Fed up of living in a tiny, confined apartment in the city and struggling to pay rent, Lucy decided to take the plunge and pursue tent-based living in 2022. The family now enjoy a more simplistic, stripped back way of life surrounded by trees and wildlife. Alana goes to nature school while Asa is homeschooled, and they spend most of their time barefoot. Lucy hasn’t been to the doctors in five years and doesn’t take her kids, preferring plant medicine instead. She’s passionate about urine therapy, which involves collecting her urine, drinking, and using it as a cleanser. Lucy has received no end of criticism for her controversial way of life with people saying she’s “crazy, mad, saying that it’s really extreme”. But despite what others may say Lucy has no plans to leave her tent home. She wants to instil in her children a free spirited way of thinking and teach them “you are free to live the life that you chose, if you want to go off and live in the woods, you can go off and live in the woods.”

In this Born Different special, we meet individuals who suffer from an extremely rare condition which prevents them from being exposed to sunlight.

TAMMY, 46, from Florida, is not your average grandmother. She lives a very extravagant life and has hit back at online trolls who hate her appearance and way of living. Tammy is a multiple business owner, from real estate, to OnlyFans and loves the expensive things in life. Tammy describes her look as something in between Barbie and Dolly Parton, which is only enhanced by her six breast surgeries. Tammy gets a lot of attention, positive and negative about her looks and says that you either 'love me or hate me - there's no middle ground'. She told Truly: "When I get the negative reactions, I feel that it's not me, it's them and they are narrow minded. I know this is my choice and how is my look affecting you? Going this large was the best investment I did in regards to weeding through fake people." Tammy's strength was something that came to her after the loss of her youngest son Matthew, which affected and changed the family dynamic forever. Tammy said: "The loss of Matthew changed my views for a few things. Always be kind to people and to really not care what anybody thinks." With that, Tammy expanded her modelling businesses, including OnlyFans, and got the surgeries she always wanted. With the support of her Stepson, Daniel, and her ex husband, now best friend Jim, Tammy hopes to keep growing her online presence and wants to be as successful as possible. Tammy added: "For the people who feel the need to tear other people down, I might not agree with everybody's beliefs but I surely don't tear other people apart for no reason."

GROWING UP as a Barbie fan, Bibi Bugatti has always wanted to achieve the picture-perfect look for herself - so much so that she started getting facial fillers when she was only 17. After a few years of getting fillers, she moved on to implants. On her 27th birthday, Bibi spent €50,000 for "new boobs and a new face". Having spent her teenage years in the Netherlands, Bibi said she never felt like she fit in. "I think they look very basic and very boring, and they judge you really quickly about how you look," Bibi added. "They really don't like it when you wear makeup, when you do surgeries. Then they start to hate you." After moving to Dubai, she cut off all contact with her friends and most of her family back home because they didn't agree with her lifestyle choices. "I don't want to fit in. I don't want to be basic like everyone. I listen to nobody," Bibi said. Follow Bibi: @bibibugattiofficiall Follow MUA Shannon: @shanmua_

THE BAILEYS have become a viral sensation after sharing videos of wife, Rachel, breastfeeding her husband, Alexander. Their videos have riled up a lot of shocked people online and they’ve had no end of criticism for their behaviour, but they just shrug off the haters and are ‘milking’ the attention instead. The couple live in Florida with their 3 kids; Troy (7), Aria (6) and Matthew (2). It was when Rachel was breastfeeding Aria that Alexander got his first taste of her milk. The couple were on a cruise without the kids and Rachel forgot her breast pump so Alexander stepped up to relieve her pain and reduce the risk of her getting mastitis. Initially sceptical, Rachel told us “at the time I thought it was gross but it ended up being the best thing.” Alexander now feeds once a week, something he looks forward to as it's a form of meditation for him, as well as a bonding moment between man and wife. Alexander says it's also done wonders for his immune system, “I haven’t really got sick in 3 years.” The couple have created a prominent social media presence by openly and unapologetically sharing their antics online. Alexander has written a song called ‘Milk Float’ and they’ve co-written a book. Their breastfeeding content has attracted a plethora of negativity from people with comments like; “you are sick, weird, disturbing”. This doesn’t phase the Baileys and they plan on continuing their feeding sessions until Matthew is weaned off, which unfortunately for Alexander, is happening imminently…

THE pressures of modern life mean that most of us have probably dreamt at one time or another of fleeing to the hills. But real-life caveman Angelo Mastropietro has made his hermit dream a reality - by spending over £160,000 turning a 700-year-old cave, carved into 250 million year old sandstone cliffs in the the Wyre Forest, into his dream home. The 38-year-old, originally from Worcestershire, was living a high-flying life as the head of a successful recruitment company in Australia when he was diagnosed with multiple sclerosis in 2007. The condition led to him being temporarily paralysed - and inspired him to seek a simpler life.

ANDI Doherty, from Kent, UK, has tattooed over 80% of his body and says that his family haven't seen his face in over 20 years. Andi told Truly: "I got my very first tattoo when I was 14, a bleeding love heart on my ankle. After I got that first tattoo there was no stopping me! I like the fact that they're bold, they're in your face, it's a conversation starter and it makes you stick out from the crowd." Tragically, Andi's young daughter passed away six years ago and ever since then a lot of his tattoos have been a tribute to her; so they mean a great deal to him. Today, with the help of makeup artist Aylish, Andi will be having all of his tattoos covered up and giving his family the surprise of a lifetime. Will Andi's family prefer his look without the ink? Or will they realise that they prefer him with all of his tattoos?

DESTINY, 17, got pregnant when she was 14, had her son at 15 and now has a YouTube channel to help support her baby Sincere’Cordae. The teen mum thought it was going to be her and her son “against the world” and hid her pregnancy for as long as she could from her family. Destiny was completely shocked when her mother congratulated her pregnancy and was supportive as growing up her mum was 'strict'. Although she doesn’t condone getting pregnant at such a young age, the content creator tells Truly that she has no regrets and is focused on making her baby’s life as easy as possible.

SEDRICK, 28, from Columbus, Ohio has spent over $25,000 covering his entire body in tattoos. Sedrick's obsession with ink started when he was 13; he got his first tattoo which initially he regretted. However, this proved only to be the beginning as now Sedrick's goal is to become the youngest person with their body completely covered in ink. Today, Sedrick, who is a barber by trade, is going to do something he thought would never be possible... To see his face without tattoos. Sedrick told Truly: "It's been about 14 years since I've seen myself without tattoos and I can't remember how that feels, I don't know how I'm going to recognise myself." After Sedrick's tattoo cover up is complete, he will be surprising his girlfriend and work colleagues at his barbershop with his new look. Will they all recognise him? Or will they mistake him for a total stranger?

THE alleged “King of Three’s” on TikTok, Stephen Ludwig, also known as ‘Stevo’, is a 5ft 1" basketball player who was born with a condition called Maffucci syndrome. It is a bone disease that has meant his left leg is shorter than his right by nine inches and one of his arms is shorter than the other. In efforts to accommodate the height differences, Stevo started wearing a platform boot and became so engaged with it, that surgery wasn’t necessary. Due to the similarity in symptoms, he grew up believing he had ‘Aleyes’ syndrome, until recently being diagnosed in his adult life with Maffucci syndrome. As a child, he was also diagnosed with Myeloid Leukaemia at the age of seven and given only 11% chance of survival. Despite the various battles he has faced, whether it is playing golf with his Dad, Mike, or shooting hoops, Stevo turned to sports as an “outlet” and claims that it quickly became the “culprit to his confidence” and made him feel “alive.” With inspiration from the late NBA legend, Kobe Bryant, the funny 24-year-old was encouraged to play basketball with a “leg up” on the competitive sport and share his story with the world.

DAISY does not remember life without the "severe eczema" she experienced growing up and was prescribed steroids as treatment for "as long as [she] can remember" - until the steroids stopped working when she was 25 years old. When truly filmed with Daisy just over a year ago, she was almost a year into what she suspected at the time was Topical Steroid Withdrawal (TSW), as she attempted to go natural and let her skin heal itself. She now has an official TSW diagnosis - and she explained to truly how the withdrawal from her treatment has affected her: "The way steroids work is you put them on and the redness goes away, but when you stop using them, it comes back with a force. I was red raw." She now describes her skin as "unpredictable" and has to adapt her daily skincare to whatever symptoms she experiences day-to-day. Daisy's symptoms have often drawn the attention of others - and she says she is "used to" people making comments about her skin in public. This carried over into her dating life when she joined dating apps - with one person on Tinder pressing Daisy to give him her Instagram. When she eventually did, she noticed "30 seconds later" that she had been "unmatched." With some "terrible" dates under her belt, Daisy matched with Alexander and suddenly everything changed. Alexander remembers how, after their first date, Daisy had a flare up and was "trying to not meet up" and offer him "an out" - but Alexander did not allow Daisy to push him away and was soon "running baths, making teas, going to the shop five times a day for bath salts" for her. Daisy's relationship has made her life "almost normal" and although she still faces "struggle and pain" on a daily basis, Daisy now feels that her skin is "the least interesting thing" about her and she has learned to embrace her newfound body positivity: "Body acceptance for me is about just being happy... And not worrying about what other people think. If you're happy with yourself there should be no problem." Follow Daisy on Instagram: https://www.instagram.com/daisymalin_skin Follow Daisy on TikTok: https://www.tiktok.com/@daisymalin

FOR PLAYBOY MODEL Ana Espinola, looks are everything. The Mexican fitness model and influencer, who now lives in Dubai, has seen her career blossom thanks to her stringent workout schedule and the help of plastic surgeons. Ana said: "There are no ugly women, just women that don't want to invest in themselves." Ana has spent over $100,000 on various cosmetic procedures including three rounds of rhinoplasty and five boob jobs. Apparently, that's not enough for the increasingly saturated social media landscape. "Everybody's a playmate, everybody's a Victoria's Secret model," Ana added. "Just showing your boobs, you think you will get viral, but there are too many boobs on social media already." Although she has built a solid following, Ana has faced criticism for getting some work done - people have accused her of looking like Michael Jackson after her nose jobs. Ana shrugged these comments off: "I don't really get offended because I do like Michael Jackson." Follow Ana: @ana_espinola_b With thanks to Alejandro Ortiz for additional photography: infiernno.work@gmail.com

ALLIE Rae, 34, transformed her life when she ditched her nursing job for a new career on OnlyFans. Making a whopping $3million during lockdown alone, Allie's new gig quickly made her a millionaire - but it didn't come without some backlash. Married with teenage sons, Allie often receives judgemental messages and cruel comments about her career choice. Allie now reacts to some of the harshest DMs she's received and we hear how she deals with being called "every son's worst nightmare".

DEBORAH was born with phocomelia - a rare condition which caused her arms to be underdeveloped at birth. When she was born, her mother refused to take her home from the hospital - meaning Deborah was placed in an orphanage for the first four and a half years of her life, until she was finally adopted by an American family. After bringing her home to Washington, Deborah's adoptive family set to work on helping her find ways to be independent: "I had help getting dressed until I learned to do it myself, my sister helped me do my hair." Deborah soon developed her own technique - using her feet as hands, which has allowed her to be fiercely independent ever since: "I use my feet to open doors, reach a mug out of the cupboard, straighten my hair." But it wasn't all smooth sailing for Deborah growing up - she would often "get the comments, get the stares" from other children at school - something she still experiences to this day: "It's constant - sometimes a kid will be like, 'Ew, what's wrong with your arms?'" And Deborah was in and out of hospital as a child too, for surgeries to shave down the bones in her arms as they regularly grew out of her skin - all whilst struggling to come to terms with her birth mother's decision not to raise her: "There's times I really struggled with [the fact that] she just left me there." However, with the support of her adoptive family, Deborah grew in confidence and now has a family of her own - a loving husband, Nathan, and their son, Matthew. In 2021, Matthew introduced his mum to TikTok and Deborah began posting videos showing how she does everyday things, as simple as folding clothes or cooking a meal. Soon, the comments were flooding in - including some that were "weird" - "hundreds of comments like 'You look like a dinosaur' or 'I thought T-Rex's were extinct?'" Deborah decided it was time to hit back, posting a video wearing T-Rex arms on the end of her fingers - a video that very quickly went viral and enabled Deborah to find her voice when addressing common misconceptions: "People say what they want to say and it's up to you how you want to respond... I try to have a positive, funny outlook." And now that Deborah has built up a following online, she is determined to use her platform to ensure young people growing up with similar conditions feel represented: "Maybe one day a kid with a limb difference is going to be scrolling TikTok and be like, 'Oh, she looks like me!' Now we have a platform where we can be like, 'We're here, we're taking up space!'" Follow Deborah on TikTok: https://www.tiktok.com/@deborah.look.no.hands Follow Deborah on Instagram: https://www.instagram.com/deborah_looknohands

LEVI JED MURPHY has made headlines recently after undergoing five plastic surgery procedures in one sitting. The surgery, which took 8 hours, included a full face lift, a deep temporal brow lift, buccal fat removal, scar revision as well as liposuction on Levi's chin. Levi recalled: "The process this time was a lot harder than what it usually is. When I woke up, I instantly regretted getting it." He documented his recovery journey on Instagram and a lot of fans were horrified at the sight of him. "Everyone thought I had completely, like, mangled up my face and like, was botched forever," Levi added. To help speed up his recovery, Levi has been getting lymphatic drainage massages to help with his swellings. But as for more procedures in the future, Levi is still undecided. "I would say that I'm content with how I look. I wouldn't necessarily say I'm happy about it, but I just think I'm like trying to chase something that maybe doesn't exist," Levi said. "I'm probably never going to be happy with my appearance." Follow Levi: @levijedmurphy With thanks to Touch of Health - Lymphatic Drainage Expert | Body Contouring: @touchofhealthuk

CARLA, 28, lives in Mississippi with her 5-year-old daughter Riley and fiance Luke. Carla was diagnosed with Bilateral Retinoblastoma when she was just 3. The cancer was in her eyes leading her to have her left eye removed. Her daughter Riley was diagnosed with the same condition at 6 months old and had her right eye removed aged 2. Both mother and daughter now have a prosthetic eye each. Carla told Truly: “One thing I really feared was it affecting her at a young age.” But against all odds Riley has turned out to be a very confident young lady, Carla said: “She tells me all the time ‘mumma, I’m beautiful’.” Carla wasn’t so confident growing up and said “until I was 21 I literally hid behind my hair”. Carla started entering Riley in beauty pageants and making TikTok videos with her to boost her confidence and reassure her of her beauty but they’ve received a lot of judgmental comments. One video in particular of them removing their prosthetic eyes received comments like; “you poked her eye out so you would match” and “irresponsible to have a child knowing you would bring that pain to them.” Carla’s response to those people is “we don’t care… God had a purpose for her”, and looks forward to a bright future for her daughter.

MARIA Spallek, 33, from Germany, has been collecting tattoos since she was 18 years old. When she was 23, Maria got her eyeball tattooed and by the time she turned 24, she tattooed her face... All things her mum Diana, wasn't happy with. Maria's unique look has brought her a lot of attention from the public, but not all of this has been positive. Maria told Truly: "I have had some bad experiences from people on the street, people have thrown small stones, on the way to the subway, someone grabbed my jacket and screamed at me." Despite these judgements, Maria loves being tattooed and is not planning to stop anytime soon. Today, with the help of makeup artist Anna, Maria will be transformed into a bride to be... A few years back Maria was engaged to be married but after the breakdown of this relationship she decided that marriage was not for her. Maria is now going to surprise her mum with her transformed look, as she knows it will mean an awful lot to her. Maria said: "I think my mum was more excited about it than me, but today I just want to give her one look at her daughter in a wedding dress that she will probably never have." Will this transformation change Maria's thoughts about marriage, or will Maria stick to her principles and say no to the dress? Follow Maria: https://www.instagram.com/balea_scarleg/ Follow Makeup Artist Anna: https://www.instagram.com/rivera_styling/

26-YEAR-OLD Celia wakes up at the same time every morning to unplug her Hickman line - a tube that runs directly into her heart. Four years ago, Celia's digestive system shut down and she has been unable to eat or drink since, so the Hickman line delivers all her food, drink and medicine directly into her bloodstream. Running the feed for 14 hours from evening to morning every day, she has the remaining 10 hours "unplugged" to go about her life. Celia was born with an ultra rare condition called Loeys-Dietz syndrome (LDS) - a genetic disorder that affects the connective tissue throughout her body. Celia described to truly how it affects her day-to-day: "It causes a lot of chronic pain, it makes me incredibly tired and also I'm incredibly susceptible to various different illnesses. Many of my organs have now either not formed properly or started shutting down." Because of the wide-ranging effects LDS has on the body, the average life expectancy for someone with the condition is 36 years - so Celia and her family have to live in the knowledge that "it could happen tomorrow, it could happen in five or six years, but it will happen out of the blue." This is not lost on Celia's dad, who also has LDS and from whom Celia inherited the condition: "I am the gift that keeps on giving, that's the problem." And while the support of her parents and her husband, James, crucially enable Celia to live her best life, only one in every 70 million people have the condition and very little is still known about it. Celia has dedicated her working life to advocacy for and on behalf of disabled people - campaigning and lobbying to ensure their rights are not forgotten - and hopes to bring more attention to super-rare conditions like LDS: "One of the reasons that they're rare is because people don't know about them. If you do meet somebody that has a rare condition... Ask questions, be insightful, be respectful and be kind." And Celia's parents could not be more proud of what she has achieved up to now: "She's amazing, she gets up every day and she gets on with it. The fact that we're sitting here talking about her is her greatest achievement." Follow Celia: https://linktr.ee/celiachartresaris