Latest news with #AngelmanSyndrome
Daily Mail
3 days ago
- Entertainment
- Daily Mail
Colin Farrell looks smart in a navy blue suit as he films for season two of Apple TV series Sugar in Los Angeles
Colin Farrell looked smart as he filmed scenes for season two of his Apple TV series Sugar in Los Angeles on Friday. The Irish actor, 48, who stars as lead character John Sugar in the neo-noir mystery drama, wore a navy blue suit as he got in character. He completed his look with a black tie and added a pair of brown leather dress shoes. Colin shielded his eyes with a pair of square-framed sunglasses and was seen chatting with other members of the cast. The series follows private investigator John as he investigates the disappearance of a wealthy movie producer's granddaughter. From A-list scandals and red carpet mishaps to exclusive pictures and viral moments, subscribe to the DailyMail's new Showbiz newsletter to stay in the loop. It comes after Colin revealed the reason behind his decision to place his adult disabled son into care - explaining that he wants to ensure his son's care is properly managed while he and his ex-partner are still alive, and to provide him with a strong sense of community. The actor previously explained how son James, 21, was heartbreakingly misdiagnosed with cerebral palsy before doctors eventually confirmed he was suffering from Angelman syndrome. Angelman syndrome, a rare genetic disorder that primarily affects the nervous system, causes severe physical and intellectual disability. Speaking to Candis Magazine, Colin revealed he and his ex Kim Bordenave have made a decision and plan to settle James into a long-term care facility. He said: 'It's tricky, some parents will say: "I want to take care of my child myself." And I respect that. 'But my horror would be... What if I have a heart attack tomorrow, and, God forbid, James' mother, Kim, has a car crash and she's taken too – and then James is on his own? 'Then he's a ward of the state and he goes where? We'd have no say in it.' He and Kim are hoping to 'find somewhere we like where he can go now, while we're still alive and healthy, that we can go and visit, and we can take him out sometimes'. Colin continued: 'We want him to find somewhere where he can have a full and happy life, where he feels connected.' WHAT IS CEREBRAL PALSY? Cerebral palsy is the name for a set of conditions affecting movement and co-ordination stemming from a problem with the brain that takes place before, during or soon after birth. Symptoms are not typically obvious immediately after a child is born — but instead normally become noticeable after two or three years. They include delays in reaching development milestones, such as: not sitting by eight months; not walking by 18 months; appearing too stiff or too floppy; walking on tip-toes; weak arms or legs; fidgety, jerky or clumsy movements; random, uncontrolled movements; Difficulty speaking, swallowing or seeing — along with learning difficulties — can also be symptoms. Cerebral palsy symptoms can be caused by a number of things and are not necessarily an indication of the condition, which can occur if a child's brain does not develop normally while in the womb, or is damaged during or soon after birth. Causes include bleeding in the baby's brain, reduced blood and oxygen supply, infection caught by the mother while pregnant, asphyxiation during a difficult birth, meningitis or a serious head injury - though the precise cause is often not clear. There is no cure currently, but physiotherapy, speech therapy, occupational therapy and medication are often used as treatment. Each person living with the condition is affected in a different way, but generally speaking most children live into adult life and some can live for many decades. The Phone Booth actor previously discussed his first-born son's condition and said medical advice was sought after James missed developmental milestones and struggled to sit up or crawl as a baby. Colin explained how many sufferers of the rare syndrome are often misdiagnosed with cerebral palsy due to both conditions having similar symptoms. He told People: '[James] couldn't sit up. He wasn't crawling. I think he was a year and a half when we took him to get really checked out, and he was diagnosed as having cerebral palsy.' Cerebral palsy is the name for a set of conditions affecting movement and co-ordination stemming from a problem with the brain that takes place before, during or soon after birth. Difficulty speaking, swallowing or seeing — along with learning difficulties — can also be symptoms. Colin said: 'It was a common misdiagnosis, because it shared a lot of the same characteristics. And that was a downer for sure.' The Oscar nominee revealed that, when James was only about two and a half years old, a pediatric neurologist suggested he be tested for Angelman syndrome. Recalling the moment he received the diagnosis, he shared: 'I remember the first two questions I asked were, "What's the life expectancy and how much pain is involved?" 'And the doctor said, "Life expectancy, as far as we can tell, is the same for you and for me, and pain, no."' A doctor had noticed an unusual symptom that prompted him to test for Angelman syndrome. Colin explained: 'One of the characteristics of Angelman syndrome is outbreaks of laughter. And the doctor saw that James was laughing a lot and doing this movement [he waves his hands],' the father-of-two shared. Angelman syndrome is also characterized by seizures, which Colin - who also shares son Henry Tadeusz, 15, with Polish actress Alicja Bachleda-Curus, 41 - said is 'one of the things that parents struggle with greatly'. He added: 'Thankfully, James hasn't had a breakthrough seizure now in about 10 or 11 years, but I've been in the back of ambulances, I've been in the hospital with him. 'I've done Diastat [a sedative] up his rectum to get him out of a seizure that lasted longer than three minutes. Finding the right amount of medication that doesn't have adverse effects — that's all very tricky business.' The actor is now launching the Colin Farrell Foundation to provide support, education, and advocacy for adults with intellectual disabilities. 'This is the first time I've spoken about it, and obviously the only reason I'm speaking is I can't ask James if he wants to do this,' he said. The proud dad stated that his eldest son 'has worked so hard all his life, so hard'. He said: 'Repetition, repetition, balance, his jerky gait. When he started feeding himself for the first time, his face looks like a Jackson Pollock by the end of it. But he gets it in, he feeds himself beautifully. I'm proud of him every day, because I just think he's magic.' Colin also described watching his son take his first steps just before his fourth birthday. Detailing the 'profound' moment to People, Colin said: 'I knew they [James's carers] were working on walking. And I stood over there, and she let him go, and he just came to [me]. He shares his younger son Henry with Ondine co-star, Polish actress Alicja Bachleda-Curus (pictured, in 2010) whom he dated from from approximately late 2008 to early 2010 'It was so profound. It was magic. 'I'll never forget just the face of determination on him as he walked toward me. He took, like, six steps, and I burst into tears.' James's condition is severe enough that he is nonverbal and requires the help of a live-in caregiver to accomplish his day-to-day tasks. When James was four, Colin went public with his Angelman Syndrome, saying his son had demonstrated 'amazing courage' in the face of his condition. Shortly before James turned 18, Colin and Kim filed to obtain a conservatorship of him, noting he still needed help with tasks like getting dressed and making meals. He later went on to reveal that he and James's mother make sure to share in the smallest victories and enjoy the milestones whatever age they happen - including James's first words aged six, being able to feed himself at 19, and getting his seizures under control. Colin has maintained a very private life and has not spoken about his son in great detail until recently, although he told InStyle he first decided to 'talk publicly about the pride and joy I had in our son' while attending the 2007 Special Olympics. He said: 'He has enriched my life, but I don't want to minimize the trials that so many families go through; the fear, consternation, frustration, and pain... When you're the parent of a child with special needs, it's important to feel that you're not alone.' Discussing being a parent to a child with disabilities, the Hollywood star said that James was the main reason he was able to get sober. Colin and James's mother Kim dated from 2001 to 2003. He later had Henry with his Ondine co-star Alicja, whom he dated from from approximately late 2008 to early 2010. What is Angelman syndrome? Angelman syndrome is a genetic condition that affects the nervous system and causes severe physical and learning disabilities. A person with Angelman syndrome will have a near-normal life expectancy, but they will need support throughout their life. Characteristics of Angelman syndrome A child with Angelman syndrome will begin to show signs of delayed development at around six to 12 months of age, such as being unable to sit unsupported or make babbling noises. Later, they may not speak at all, or may only be able to say a few words. However, most children with Angelman syndrome will be able to communicate using gestures, signs or other systems. The movement of a child with Angelman syndrome will also be affected. They may have difficulty walking because of issues with balance and co-ordination (ataxia). Their arms may tremble or make jerky movements, and their legs may be stiff. Several distinctive behaviours are associated with Angelman syndrome. These include: * frequent laughter and smiling, often with little stimulus * being easily excitable, often flapping the hands * being restless (hyperactive) * having a short attention span * trouble sleeping and needing less sleep than other children
Daily Mail
24-05-2025
- Entertainment
- Daily Mail
A-List movie star, 48, shocks fans with his chiselled torso as he goes shirtless while grabbing a coffee in LA - can YOU guess who it is?
One of Hollywood's biggest stars stunned onlookers earlier this week, as he showed off his shirtless physique while grabbing a coffee in Los Angeles. Colin Farrell showed of his chiselled torso as he enjoyed the low-key outing, which was posted by a fan on TikTok. The Irish born actor, 48, cut a low-key figure as he headed out solo, before stopping to send a text. Posting a clip of the surprise sighting, a fan captioned the post: 'Living in LA is so wild because why was I craving a coffee and I got...' with the photo of Colin. One fan begged for a similar interaction and said 'may this type of celebrity sighing find me'. From A-list scandals and red carpet mishaps to exclusive pictures and viral moments, subscribe to the Daily Mail's new Showbiz newsletter to stay in the loop. The sighting comes after The Gentleman actor shared a heartfelt message about placing his adult disabled son into care. He explaining that he wants to ensure his son's care is properly managed while he and his ex-partner are still alive, and to provide him with a strong sense of community. The actor previously explained how son James, 21, was heartbreakingly misdiagnosed with cerebral palsy before doctors eventually confirmed he was suffering from Angelman syndrome. Angelman syndrome, a rare genetic disorder that primarily affects the nervous system, causes severe physical and intellectual disability. Speaking to Candis Magazine, Colin revealed he and his ex Kim Bordenave have made a decision and plan to settle James into a long-term care facility. He said: 'It's tricky, some parents will say: "I want to take care of my child myself." And I respect that. 'But my horror would be... What if I have a heart attack tomorrow, and, God forbid, James' mother, Kim, has a car crash and she's taken too – and then James is on his own? 'Then he's a ward of the state and he goes where? We'd have no say in it.' He and Kim are hoping to 'find somewhere we like where he can go now, while we're still alive and healthy, that we can go and visit, and we can take him out sometimes'. Colin continued: 'We want him to find somewhere where he can have a full and happy life, where he feels connected.' The Phone Booth actor previously discussed his first-born son's condition and said medical advice was sought after James missed developmental milestones and struggled to sit up or crawl as a baby. Colin explained how many sufferers of the rare syndrome are often misdiagnosed with cerebral palsy due to both conditions having similar symptoms. He told People: '[James] couldn't sit up. He wasn't crawling. I think he was a year and a half when we took him to get really checked out, and he was diagnosed as having cerebral palsy.' Cerebral palsy is the name for a set of conditions affecting movement and co-ordination stemming from a problem with the brain that takes place before, during or soon after birth. Difficulty speaking, swallowing or seeing — along with learning difficulties — can also be symptoms. Colin said: 'It was a common misdiagnosis, because it shared a lot of the same characteristics. And that was a downer for sure.' The Oscar nominee revealed that, when James was only about two and a half years old, a pediatric neurologist suggested he be tested for Angelman syndrome. Recalling the moment he received the diagnosis, he shared: 'I remember the first two questions I asked were, "What's the life expectancy and how much pain is involved?" 'And the doctor said, "Life expectancy, as far as we can tell, is the same for you and for me, and pain, no."' A doctor had noticed an unusual symptom that prompted him to test for Angelman syndrome. The actor is now launching the Colin Farrell Foundation to provide support, education, and advocacy for adults with intellectual disabilities. 'This is the first time I've spoken about it, and obviously the only reason I'm speaking is I can't ask James if he wants to do this,' he said. The proud dad stated that his eldest son 'has worked so hard all his life, so hard'. He said: 'Repetition, repetition, balance, his jerky gait. When he started feeding himself for the first time, his face looks like a Jackson Pollock by the end of it. But he gets it in, he feeds himself beautifully. I'm proud of him every day, because I just think he's magic.' Colin also described watching his son take his first steps just before his fourth birthday. Detailing the 'profound' moment to People, Colin said: 'I knew they [James's carers] were working on walking. And I stood over there, and she let him go, and he just came to [me].
The Sun
24-05-2025
- Entertainment
- The Sun
Fans shocked as they spot Hollywood A-lister texting topless outside a coffee shop – would you have spotted him?
FILM fans were left craving iced coffee to cool off after seeing footage of a shirtless Hollywood A-lister texting outside a shop in LA. The film hunk might be 48 now, but he's still in fantastic shape and only getting better with age. 5 Wearing a backwards baseball cap and black running shorts, the actor smiled as he text on his phone by the roadside. One TikTok user wrote: "Oh he looks good." Another said: "May this type of celebrity sighting find me." A third added: "He's been FINE his whole life." It is of course Irish superstar Colin Farrell. The Penguin lead is considered one of the industry's good guys and a number of social media users shared anecdotes of their interactions with him. Some attended yoga classes at LA studio Modo, while others credited his work ethic and shared how he was happy to hang out with regular folk when not shooting movies. One said: "We were in the same yoga class for a long time together. He's awesome." Another posted: "We were in the same yoga class for a long time together. He's awesome." The heartthrob recently shared some deeply personal news that showed a different side to his character. Colin Farrell opens up on sons rare condition He revealed the heartbreaking reason he's planning on putting his disabled son James, 21, into a long-term care facility. James has Angelman syndrome, a rare genetic disorder that causes intellectual and developmental delay. According to the Mayo Clinic, it "causes delayed development, problems with speech and balance, mental disability, and, sometimes, seizures". James, whose mum is Kim Bordenave, was diagnosed at four years old. Speaking to Candis Magazine for their May 2025 issue, Colin revealed why he and Kim made the decision. "It's tricky, some parents will say: 'I want to take care of my child myself.' "And I respect that," he told the outlet. "But my horror would be... What if I have a heart attack tomorrow, and, God forbid, James' mother, Kim, has a car crash and she's taken too – and then James is on his own?" Symptoms of Angelman syndrme Accoding to Mayo Clinic, symptoms of Angelman syndrome include: Developmental delays, including no crawling or babbling at 6 to 12 months. Mental disability, also called intellectual disability. No speech or little speech. Trouble walking, moving or balancing. Smiling and laughing often and seeming happy. Being easy to excite. Trouble sucking or feeding. Trouble going to sleep and staying asleep. The health provider also states that people who have Angelman syndrome may also have: Seizures, often beginning between 2 and 3 years of age. Stiff or jerky movements. Small head size by age 2. Tongue thrusting. Hair, skin and eyes that are light in color. Odd behaviors, such as hand flapping and arms uplifted while walking. Crossed eyes, also caused strabismus. Curved spine, also called scoliosis. COLIN'S PLEA Last summer, Colin opened up candidly about his son's condition. Speaking to People Magazine, Colin said how he wanted the world to treat his son with kindness and respect. "I want the world to be kind to James. "I want the world to treat him with kindness and respect," he said. Colin went on to say: "Once your child turns 21, they're kind of on their own. "All the safeguards that are put in place, special ed classes, that all goes away, so you're left with a young adult who should be an integrated part of our modern society and more often than not is left behind." Around the same time of his interview with the outlet, Colin announced the launch of the Colin Farrell Foundation. The foundation is "committed to transforming the lives of individuals and families living with intellectual disability through education, awareness, advocacy, and innovative programs". 5 5 5
Yahoo
15-05-2025
- Health
- Yahoo
Angelman Syndrome Clinic in Colorado provides hope to families
(COLORADO SPRINGS) — When a child is born, so is a whole host of hopes and dreams. 'When you hold your child for the first time, the first time you hear their cries… you play out their lives completely,' said Emanuel Prodan, a father of three, 'and you hope it's the most incredible version of a life that they could possibly want.' That's what happened when his son Jonah came into the world on Dec. 18, 2020. 'And you think about all the fun times you're going to have with them growing up,' said Emanuel. 'And then kind of just as quickly, that goes away.' Early on, Emanuel and his wife Jayme could tell their son was different. 'I started noticing around five months that he wasn't meeting milestones,' said Jayme. 'He wasn't rolling; he wasn't even trying to sit up. There was so, so much information on the internet… and delays do exist with no underlying medical condition, and that's what I was just really hoping for.' Initially, doctors downplayed their concerns, but Jayme said she knew something wasn't right. 'I had to fight for a referral, and I had to fight for a neuro consult.' 'As time went on, we were starting to notice more and more things,' said Emanuel. For more than a year, they pushed their doctors. 'My gut knew something more was at play,' Jayme explained. 'Finally, they did a neurological test and then they did some genetic testing, and then that's when they realized, okay, he's got Angelman syndrome,' said Emanuel. Finally, the Prodans had an answer, but so many more questions. 'Angelman syndrome is a genetic development disability,' said Dr. Wendy Pierce, Pediatric Rehabilitation and Medicine Specialist at Children's Hospital Colorado. 'It's an inherited disability that affects all aspects of speech, the ability to perform activities of daily living, and mobility.' 'When I explain it to people, I say it affects mobility in every way, and when you think about mobility in every way, you don't really think about coordinating chewing, coordinating your tongue to speak, coordinating swallowing,' said Emanuel. 'It's kind of like just a complete lack of coordination in your body,' said Jayme. 'I think in a lot of instances Jonah can understand what I'm asking of him, but it's like he's trapped in a body that cannot coordinate all of the things to do, even the simplest of tasks.' According to Dr. Pierce, symptoms of Angelman Syndrome range in severity. 'There is a big spectrum,' she said. 'There are folks who have Angelman who actually do not have the ability to walk, and there are kids who have the ability to walk; most kids have speech challenges.' When Jonah was diagnosed, Emanuel, a pilot in the U.S. Air Force, was stationed in Mississippi. 'There just wasn't specific care for Angelman there, and so we just kind of sprang into action. We got that first bit of shocking news and went, 'Okay, how do we help him? I think we need to move,'' said Emanuel. Luckily, they landed in the Centennial State, home of the Chromosome 15 and Related Disorders Clinic at Children's Colorado, a designated Center of Excellence and one of only three clinics in the world to earn this distinction for its level of care. 'We have a multidisciplinary clinic specifically for this diagnosis,' said Dr. Pierce. 'So all of the providers that are in that clinic are experts and see Angelman.' 'They knew Jonah's syndrome before we came in,' said Jayme. 'They had treated children with Angelman Syndrome.' 'It's been spectacular. I mean, every time we've met with them, especially the first time, was just unbelievable,' said Emanuel. 'Getting to meet eight or nine different doctors who were just there to talk about Jonah.' Providers include neurologists, physical, occupational, and speech-language therapists as well as genetic specialists, dieticians, and more. 'It serves as a one-stop shop for families so that way, families can just take one day off of work and see multiple different specialties together,' said Dr. Pierce. 'And especially for families with complex needs, it's nice when you know all your providers are together and they are talking with one another so that way they don't feel like they have to be the go-between for their different specialists.' 'We felt such a sense of relief. It went from this nameless, faceless thing… and then boom, we've got this whole care team,' said Emanuel. 'It's changed our entire life, and I cannot, I cannot say that enough,' said Jayme. 'It's been fun watching him progress as he's been learning to improve upon his mobility,' said Dr. Pierce. 'He's still very young, and he still has a lot of potential.' A potential that Jonah works hard every day to reach. Jayme said he has multiple appointments every week with physical, speech, and occupational therapists. 'He's just an amazing little boy,' said Jayme. 'He challenges himself all the time to just go harder, go faster.' And he does it all usually with a smile on his face, a classic characteristic of those with Angelman Syndrome. 'He smiles a lot,' said Jayme. 'I think it's like the instinctive, like 'Oh, this is awkward, I'm just going to laugh through it,' kind of thing because very often we will find him laughing at situations that are not funny at all.' The Prodans will be the first to admit that life isn't always heavenly, but they have their own little angel helping them see the light. 'I remember really struggling; I just want him to live a full life,' said Emanuel. 'And I remember thinking to myself, like, 'What do I mean by that? Does going to college mean having a full life?' Plenty of people don't go to college, and they live full lives. Does being married make you have that? No. Does having kids? No.' What initially seemed like a devastating diagnosis has opened the Prodans' eyes to a whole new world. 'I want people to know that there is hope beyond the diagnosis,' said Jayme. 'It doesn't have to be the worst possible thing.' 'If I told myself four years ago what my day would look like, I think it would be kind of crushing to four years ago me,' said Emanuel. 'But today, it's normal. We're growing with him.' And when times do get tough, they lean on their faith and ask, 'What would Jonah do?' 'People do hard things every single day, and Jonah does hard things every single day,' said Jayme. 'And I can meet him there and do those hard things with him.' 'If he overcomes it every single day, who are we to sort of lie down and go 'I can't take this anymore? I have to give up,' He's so resilient,' said Emanuel. Jonah will never fly planes like his father or teach at the Air Force Academy, but he teaches those around him important lessons every day. 'Everything that he produces is from a place of compassion, from a place of love,' said Emanuel. 'He has never met somebody he doesn't care for. He loves everybody. And that gives me the perspective of, if he can be that way, then innately we all have that capability.' Emanuel said Jonah's love of life and contributions to society have also caused him to completely reevaluate what he used to consider important. 'I think I've always sort of come from a perspective of, we need to be productive and be at work… and Jonah kind of shattered that for me in the sense that I don't see him as a person of value based on what he can produce or what he can't produce,' said Emanuel. 'He's valuable. He contributes. It just looks different than what we're used to being told contribution and value look like in society. He's a joy to be around.' The Chromosome 15 and Related Disorders Clinic provides care for people of all ages from before birth through adulthood. According to Children's Hospital Colorado, 1 in 12,000 to 20,000 people have Angelman Syndrome, and approximately 500 to 1000 cases occur annually. Copyright 2025 Nexstar Media, Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.
Daily Record
29-04-2025
- Entertainment
- Daily Record
Glenmavis beauty secures Miss Great Britain Glasgow finals place for second year in a row
A Glenmavis beauty has secured a place in the Miss Great Britain Glasgow finals for a second year in a row - and will once again use her model behaviour to support a charity aiming to cure the rare genetic condition her young nephew suffers from. Efia Quartey, 18, is "so excited" to make a return to the catwalk and continue backing her brave nephew Hudson, four, of Gartcosh, and his battle with Angelman Syndrome, which affects only one in every 15,000-17,000 people. In her efforts towards being crowned queen at the Glasgow finals in June, Efia is again fundraising for FAST UK (Foundation for Angelman Syndrome Therapeutics). Angelman Syndrome is a genetic disorder that affects the nervous system and causes severe physical and intellectual disability. Efia has revealed that Hudson is "doing well" and continues to be wowed by "the wee superhero". She told Lanarkshire Live : "Hudson is defeating all of the odds and we are all so proud of how he is battling Angelman Syndrome. "We were told he would never walk or talk but he has started talking - often saying 'Mama' - and taking a lot of steps unassisted. "He is a wee ray of sunshine and I hope I can raise as much as possible for FAST UK again this year. "There have been some successful clinical trials into Angelman Syndrome but it's still a really new condition that even a lot of doctors and nurses are still learning about, so the more support the charity receives the better." As previously reported by Lanarkshire Live , Efia, who turns 19 just before the Miss Great Britain Glasgow finals on June 20, has a background in modelling, and passion for the industry from a young age . Her spot in last year's Glasgow finals came about after a chance encounter with the regional director at the Fort shopping outlet who came up to Efia's mum and said, "your daughter is stunning", and that she would put her straight through to the finals. Responding to a second consecutive finals appearance, a delighted Efia said: "I am so excited to be back competing for Miss Great Britain Glasgow. "Last year's experience will help me this time around and it's even more thrilling to be there again. "I loved every minute of it. I did a few appearances after the event last year and I was certain it was something I wanted to repeat. "The finals are a month earlier this year so I have less time to prepare but I want this so badly and will give my all to be successful." Hard-working Efia has her own business, Fifi Beauty salon in her home village, and has also donated funds and clothing to Airdrie Community School Uniform Bank. She added: 'I have ran my own business for three years and it is going tremendously well. We are a small team with our own skill-set and everyone is really delighted for my second inclusion in Miss Great Britain. 'My mum is my biggest supporter and she is so proud of me. I couldn't have done it all without her.' To donate to Efia's fundraising campaign, search for her name on the JustGiving website . *Don't miss the latest headlines from around Lanarkshire. Sign up to our newsletters here . And did you know Lanarkshire Live had its own app? Download yours for free here .
