AN INTER-ABLED couple have revealed how their life of ‘shared experiences’ has made their relationship stronger than most, even in the face of judgement and ignorance from others. Max Stainton, 28, who was born with Cerebral Palsy, met his fiancée Candy Parfitt, 29, three years ago when she became his PA at work, and they have since developed a unique bond. The Londoners are to be married in September, and say that Candy’s dual-role as Max’s carer and partner has enriched both their lives, rather than hindered them. Candy even supported Max on his ambitious project to become the first disabled person to reach Mount Everest Base Camp on horseback – a feat they accomplished together in April 2018.
YEARS of bullying and judgement have not stopped one young model from embracing her skin condition and throwing off the shackles of a cover-up make-up regime that would take close to an hour each day. Storm Frederick, of East New York, has a new-found confidence after choosing to celebrate the Vitiligo she hid for years and modeling with the condition on full display. The 20-year-old student spent years being bullied and feeling ashamed of her appearance, and says during middle school she even had to be walked home from school by her brother when the bullying became too much. Storm told Barcroft Studios: “I used to just get insult after insult. People were just judging me and thinking that my skin was gross or asking me if I got burns or ‘did I bleach my skin?’
DUE to an incredibly rare condition, a teenager’s bones are quite literally vanishing. Born with a disease that means her body slowly absorbs the calcium designated for her bones, Natalia Villegas’ bones are slowly disappearing. Natalia, 14, wasn’t diagnosed with Idiopathic Multicentric Osteolysis, or IMO, until she was two-year-old; so little is known about IMO – there are only 100 known cases in the world – that there is currently no cure. Also referred to as the ‘vanishing bone disease’, Natalia admits she is in constant pain but won’t let that stop her from living as full and independent a life as possible.
An INSPIRATIONAL stroke survivor is using her new-found voice to advocate for disability rights. Courtney Gabrus, 24, from East Norwich, New York was born with a rare defect in the LMNA gene, a form of muscular dystrophy that is thought to affect one in a million people. The uncommon muscle weakening condition meant by the time Courtney had reached 16 years old, she could no longer stand or walk without the use of an aid. On 19 December 2016, at the age of 22, she had a stroke that changed her life forever. It paralysed the whole right side of her body and she lost her ability to speak. But with the help of friends and family Courtney learnt to speak again, and has now launched a start-up promoting advocacy for disability welfare.
A 17-YEAR-OLD has been diagnosed with one of the most extreme cases of Tourette’s in the world – but with the help of ground-breaking treatment, his constant tics are beginning to ease. Trevor Smith, from Iowa, US, received an initial diagnosis when he was just eight years old, with doctors identifying mild tics in his hands, neck and around his eyes. Now a freshman at college, Trevor has spent his teenage years experiencing uncontrollable jerks and twists to his body, with none of the available treatments working. Apart from brief respite when he plays guitar and piano, Trevor has been searching for a more consistent option to help his disorder – and now, he seems to have found the answer. Trevor has received a deep brain stimulation; a surgery that is usually performed on people living with Parkison’s and involves implanting electrodes in the brain to send electronic signals through the body. And thankfully, the early signs of this last-ditch attempt for treatment are looking promising, with Trevor’s tics beginning to reduce.
A TRANS MAN is marrying his female best friend, after years of disapproval from the bride-to-be’s mum. Jamie Raines, who first felt he was male at the age of four, met Shaaba Lotun, both from Essex, when they were 16 and he was still living as female. Jamie, 25, and Shaaba, 24, met in art class and quickly became best friends. They are now set to wed next year after becoming engaged in 2017, with support from both of their families.
A YOUNG PERSON from London dresses like a genderless monster, and says they ‘don’t mind people being scared’ of them. Jazmin Bean has been into alternative fashion since becoming a teenager. Jazmin’s look revolves around extreme contact lenses, eerie doll-like makeup and sinister props. Jazmin, who is agender and prefers the pronoun ‘they’, also wears a binder to give the appearance of a flat chest. Jazmin is currently working on making their own makeup brand for those also in the alternative community. The Londoner dresses as their mythological persona most of the time, but sometimes they have to tone down their look due to harassment. Fortunately Jazmin has supportive friends and family who love their look.
HAVING a giant birthmark has taught a body positivity advocate how to accept herself for who she is and spread an inspiring message of self-love. Nathalia, of Los Angeles, was born in Brazil with a rare condition known as Congenital Melanocytic Nevus, which caused her to have a birthmark that covered 40% of her face and scalp, as well as “satellite marks” all over her body. Throughout her childhood in Porto Alegre, Nathalia underwent nine surgeries between the ages of nine months and 13 years, to remove the birthmark, which has left her with significant scarring on one side of her face. But she hasn’t let her hardships hold her back from inspiring others with her story. She told Barcroft Studios: “When I see myself in the mirror, I see a pretty woman. I love my hair, I love my eyebrow, and my smile.”
Formerly conjoined twins have started a YouTube channel to highlight their different personalities and say they are glad they were separated. Twin sisters Kendra and Maliyah Herrin share an even closer bond than most: the sisters, from Salt Lake City, Utah, were born fused together at the torso, sharing an abdomen, pelvis, liver, kidney, large intestine and two legs. Kendra and Maliyah remained conjoined until they turned four-years-old, when their parents made the difficult decision to separate them. Now 17-years-old, the Herrin sisters live with one leg each and say they are so thankful to their parents for deciding to go through with the surgery. Maliyah and Kendra may be identical twins but they have different personalities and their YouTube channel has been the perfect place to let their different characters shine.
A non-profit gives free suits, ties and training to underprivileged men, in the New York City area. Starting the initiative in 2011, Kevin, 41, came up with the idea after seeing young men in his area unable to afford a suit for job interviews as well as those coming out of prison with no smart clothes in their possession. From ad hoc clothes rails on Harlem’s sidewalks to two boutiques (in Jamaica and Harlem) 100 Suits has expanded to offer clothing to women, academies for at-risk youth and in 2016, 100 Suits started going into Rikers Island correctional facility once a month and now works there every week, running a book club and mentorship programme.
AN AGE-GAP couple, separated by 45 years, have revealed how they discovered a connection between them that extended far beyond their four-year relationship. Stefani, 24, and Don Walper, 69, of Armstrong, British Columbia, are now married with a one-year-old son, but they were shocked to learn they shared a big part of their lives years before meeting. Stefani explained to Barcroft TV: “We had been together two or three months and we were laying in bed one day talking and I was like ‘you should tell me a secret, tell me something nobody knows.’” Don began to tell Stefani about his previous marriage of five years and how he had a son with his ex-wife. “So Don tells me this story,” Stefani continued. “And I was like ‘wait what’s your son’s name?’ And Don repeats it. I was like ‘oh my god, I know him.’
A FAMILY from Watford, England, want the world to know that life can be the same when living with disabilities. Faye Pearson, 29, and her husband Stevie, 26, are parents to 18-month-old Rowan. Both of their conditions are progressive, however, neither was passed onto their son, Rowan. Stevie and Faye rely on the help of carers around the clock, but are determined that people recognize this does not mean they are in less control when it comes to bringing up their son and providing him with the love and care he requires.
LITTLE Olivia Chicchon remains upbeat despite battling a rare condition that has made the right side of her face heavily swollen. Two-year-old Olivia, was born with a lymphatic malformation that crosses her facial midline, reaches back towards her ear and goes up to her eyelid. Affecting only one in every 4,000 births, lymphatic malformations produce a small mass in the head or neck after an abnormal formation of lymphatic vessels. The Chicchon family, who reside in Lodi, California, has already experienced numerous health scares with Olivia; a bubbly girl who loves to sing and take ballet lessons with her friends. And her parents, Ivan and Teresa Chicchon, are now anxiously waiting for ground-breaking treatment that could see Olivia’s swollen tumour shrink up to 50% in size.
A FOUR-FEET model with dwarfism has started a career in modelling in an attempt to promote body positivity for people with dwarfism and other physical conditions. Fatima Timbo, from Kent, UK, has the most common form of dwarfism, called achondroplasia that affects around 250,000 people worldwide. Fatima started modelling in 2017 and has since gained more than 38,000 followers on Instagram. The 22-year-old was intensively bullied while in high school but says that in the last couple of years her confidence has soared, and she no longer cares about negative comments. Instead, the young woman embraces her condition and helps to inspire others to feel comfortable in their own skin.
A THIRTEEN-year-old boy, who once weighed 423llbs, has lost over half of his body weight thanks to weight loss surgery and is now looking to have his excess skin removed. Once known as the heaviest child in the world, Arya Permana, from Karawang, West Java, Indonesia is now an active 13-year-old after losing an incredible 220lbs. When he was 10-years-old - and at his heaviest - Arya weighed 423lbs (over 30 stone or 192kg) – the same as six boys his same age. But for all the ways that his life has improved, the weight loss has resulted in a large amount of excess skin on Arya’s arms and chest in particular. The teenager is hoping to have skin removal surgery, at the Hasan Sadikin Hospital in Bandung, after completing the national exams.
A 17-YEAR-OLD girl with paralysed arms has sworn that she’ll never let her disability stop her from dancing. Sarah Todd Hammer, from Atlanta, was just eight years old when she developed acute flaccid myelitis, a rare neurological condition which left her unable to move her arms and hands. But despite how many small difficulties she faces day-to-day, she refuses to let her disability hold her back from making impressive accomplishments. At just 11 years old. Sarah Todd published her first auto-biographical book ‘5k, Ballet and a Spinal Cord Injury’, and has published another two books since. She also continues to dance and choreographs moves to adapt to her disability.
A WOMAN who was once suicidal due to having a rare disorder that causes scaly skin, now is living life to the full. Mui Thomas, who resides in Hong Kong, suffers from a rare skin disorder called harlequin ichthyosis. Harlequin ichthyosis causes scaly skin, which cracks creating open wounds that leave suffers vulnerable to infection. The oldest survivor of harlequin ichthyosis is 35 years of age. At 26 now, Mui is one of the oldest known survivors and the world's first rugby referee living with this condition.
CONJOINED twins Shivanath and Shivram Sahu say they have no regrets turning down offers to separate them - calling their condition a ‘gift from God’. The boys, who have just turned 18 and live near Raipur in India, went viral in 2014 when a video of them washing and dressing themselves was broadcast. They say they were approached by several doctors with offers of surgery to divide them but said no. They are now too old for the operation but are happy with their decision despite it leaving them unemployable.
WEARING a floor-length maxi dress Ada Thompson’s lymphedema is almost hidden but as soon as she starts to walk or has to pick up her skirt, it’s impossible to disguise her condition, which effects the entire right side of her body. Ada Thompson, 38, from Tyler, Texas was born with primary congenital Lymphedema. Even as a baby she had to wear extra-large nappies to accommodate the swelling on her leg. As she got older the lymphedema on her leg has grown to the point that she can no longer wear any form of trousers, having to endure rude comments and stares when she is out in public.
AN INTERABLED couple whose wedding video went viral prove trolls wrong. Phillip Eling was born with a rare form of Muscular Dystrophy called Bethlem Myopathy – affecting the skeletal muscles and connective tissue, the disease is characterised by slowly progressive muscle weakness and joint stiffness. In Phillip’s case, his fingers, wrists, elbows and ankles are weak, however, he has also been diagnosed with the most severe case of his condition in the Southern Hemisphere and has to use a wheelchair to get around. Due to his lack of physical health, the 31-year-old, who lives in Adelaide, Australia, has experienced many hardships in everyday life, but remains positive and ambitious thanks to his wife Susan Eling. Originally from Kenya, Susan moved to Adelaide in 2015 and just two years later, her and Phillip were engaged. The differences between them are noticeable to all and after their wedding video of them dancing went viral online, they received a torrent of negative comments towards Susan in particular and how she was only with Phillip for his apparent wealth. But in spite of this, the married couple couldn’t be happier and are looking forward to spending the rest of their lives together.
DESPITE having an age gap of 30 years, married couple Melinda and Larry Mikla have revealed their baby plans to their friends and family. Mindy, 27, and Larry, 57, are saving up for a procedure that Mindy describes as the ‘mild version of In Vitro or IVF’. With a 95 percent chance of success, the happy couple, from Florida, are now more than hopeful they will be able to become parents in the near future - even though Larry had a vasectomy back in the early 90s. Larry already has a son, 27-year-old Bruce Mikla – the same age as Mindy - but this would be Mindy’s first child. When Larry and Mindy first met, Mindy didn’t feel like she wanted children, but as her big wedding day loomed, she began to have a change of heart.
A YOUNG mother has developed an incredibly rare water allergy after giving birth to her daughter. Cherelle Farrugia, 26, from Cardiff, Wales, breaks out into painful itchy hives whenever she comes into contact with water. The areas on her body worst affected are her chest, back and upper arms. Cherelle wasn’t born with the allergy but bizarrely discovered her skin would become red and painful after bathing – something that did not happen before she gave birth to her daughter, Willow. The unusual condition called aquagenic urticaria makes simple day-to-day actions like washing herself and bathing her 18 month-year-old daughter incredibly difficult.
A WOMAN has lost half of her body weight in just over a year after joining a fitness programme. After losing an incredible 230 pounds in a short period of time, Katelyn Broughton, who resides in Columbus, Ohio, was left with severe excess skin. The 26-year-old underwent her first skin removal surgery - a circumferential body lift - in December last year. Katelyn has set up a GoFundMe page in hopes to raise money for further skin removal surgeries - thighplasty (thigh lift), brachioplasty (arm lift) and a mastopexy (breast lift) - to remove the skin on her upper and lower body.
A MOTHER-of-two has been born with a rare birth defect that has resulted in her having no hands. Despite being born without hands, Janet Brown, 31, from Durham, North Carolina, didn’t let her condition to stop her and even became an Uber and Lyft driver. Janet told Barcroft TV: “There is no everyday task that I can’t do – my condition doesn’t stop me from doing anything.”
A 22-YEAR-OLD cites his rare condition, which affects his teeth, hair and sweat glands, with helping him become a model. Brooks Ginnan, from New York, was born with ectodermal dysplasia, a rare genetic disorder. Brooks told BTV: "I believe the statistic is about 1 in 100,000 babies are born with this. It is a condition that affects my teeth, hairs, sweat glands and a number of other aspects of my life.” The 22-year-old has now modelled- both catwalk and editorial - for brands around the world.