Latest news with #KarenThompson
Irish Times
18 hours ago
- Health
- Irish Times
An Irish family's race against time for medication: ‘The boys are living their best life possible and we want to make sure they continue to do so'
Karen Thompson first noticed something was different about her son Conor when he was a baby. 'If a toy rolled off he wouldn't try to reach for it, or he wouldn't try to climb on the furniture. He'd always have little falls, he struggled on the stairs,' she recalled. When she and her husband Jamie brought Conor, now aged 10, to the GP they were told he may have dyspraxia, a condition that affects physical co-ordination. However, they began to question that after seeing social media discussions on Duchenne muscular dystrophy, a genetic disorder which progressively weakens muscle function. READ MORE 'We found out through my sister-in-law, who worked with a girl who had a child with Duchenne. She would put up posts on social media about warning signs to look out for,' she said. Duchenne is almost exclusively seen in males, and as of 2022, approximately 110 people in Ireland were living with it. The progression of the disorder varies from person to person but it can eventually inhibit the ability to walk and carry out basic movements. Children with Duchenne generally lose the ability to walk by 12 years of age. Beyond that, it can also affect the lungs and heart. Following a blood test which confirmed that Conor's creatine kinase levels were high – which typically indicates muscle damage – he was diagnosed with Duchenne, one of the most severe forms of inherited muscular dystrophies. He was four years old. It came as a surprise to Karen, who had originally thought she was 'going down the wrong path' as nobody in the family had been diagnosed with the inherited condition before. While we're waiting now for our boys to get this, there are boys that will come off their feet in the next few months. It's heartbreaking, it's devastating — Karen Thompson After Conor's diagnosis, his parents had the blood tests carried out on their other sons, Sam (who is now 11) and Dean (8). Karen said that once Conor had been diagnosed, she 'instantly knew' that Dean, who was three years old at the time and also slightly behind on developmental milestones, had the condition. He was diagnosed following the test. Sam did not have the condition. She described feeling like 'falling down a deep, deep, dark hole' following the diagnoses, but noted the support from Muscular Dystrophy Ireland (MDI) – a voluntary organisation providing information, home support and counselling services – that had given the family a 'ledge to hold on to'. Last week, a medication called Givinostat, (also known as Duvyzat), already used in the UK and US, was approved by the European Commission on the condition it is only used to treat boys with the ability to walk, meaning that accessing the medication is a race against time for the Thompsons. Karen worries that her sons, and other boys with the condition, could lose the ability to walk before the medication is available in Ireland. 'While we're waiting now for our boys to get this, there are boys that will come off their feet in the next few months. It's heartbreaking, it's devastating,' she said. 'It's red tape, it's politics, it's all of the bureaucracy that's going to lose them their abilities.' [ SOS cancer hotline making 'a real, tangible difference in the lives of people going through chemotherapy' Opens in new window ] The Thompsons, who are from Newcastle, Co Dublin, will be taking part in a protest outside Leinster House on Wednesday at 1pm to urge the Government and health authorities to expedite access to Givinostat. Karen said, 'The boys are living their best life possible and we want to make sure they continue to do so.' Following the demonstration, a briefing will be held in Leinster House for TDs and Senators to raise awareness of the condition. Minister for Health Jennifer Carroll MacNeill has also been invited. Fianna Fáil senator and spokeswoman on health Teresa Costello said she will be taking part in the briefing and has created an information leaflet to give to those in attendance. She told The Irish Times that it was not a case of the Government 'sitting on this medication' but rather one where 'the manufacturer needs to move on this'. It's not about what you can't do, it's about finding a new way to do it — Karen Thompson In a statement the HSE explained that pharmaceutical companies were required to submit formal applications if they want their medicines to be added to a list of reimbursable items or to be funded via hospitals. As of Tuesday, 'a pricing and reimbursement application has not been received by the HSE for Givinostat', thus 'the national assessment and decision process cannot commence', it said. The HSE noted, 'The decision of pharmaceutical companies to market licensed medicines, ie whether or not to submit a formal application, is outside [its] control.' Italfarmaco, the drug's manufacturer, has been approached for comment. In the meantime, Karen said MDI had showed her family 'a window into our new world'. 'It's not about what you can't do, it's about finding a new way to do it,' she said. The Thompsons are focused on 'making sure every day is a good day' for the boys. Both of them attend a mainstream school and have a 'great little crew of pals'. Conor went on his school tour on Monday with the assistance of a power wheelchair. He enjoys playing with Lego and learning the piano, while Dean likes playing with his toys and listening to music. Both enjoy swimming. 'Like most boys their age, they are obsessed with gaming too,' Karen said. 'They're fun, crazy little lads.'
Yahoo
4 days ago
- Yahoo
70-year-old woman with dementia reported missing in Kansas City
KANSAS CITY, Mo. — A Silver Alert has been issued for a 70-year-old woman who has been reported missing in Kansas City. According to Kansas City police, Karen Thompson was last seen around 12:30 p.m. Saturday near her home at Northwest 90th Terrace and North Helena Avenue. Watch FOX4 News free on streaming TV devices by downloading WDAF+ Thompson has a form of dementia and requires medical care, police said. She is described as a white female, 5-feet 4-inches tall, weighing around 170 pounds, with gray hair and brown eyes. She was seen wearing a blue and white floral pattern shirt, pink jogging pants and no shoes, according to police. Anyone with information of her whereabouts is asked to call 911 or call the KCPD Missing Person Squad at 816-405-1450. Copyright 2025 Nexstar Media, Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.
Yahoo
15-05-2025
- Sport
- Yahoo
Rollerama closing down for the summer
SIOUX CITY, Iowa (KCAU) — After another successful nine months of roller skating, Rollerama is closing for the summer. 'It's kind of an honor, to be honest with you. There's not too many places that survived that long It's been a long history, family owned and operated. They built it back in 1966. It's been running ever since,' said Karen Thompson, the manager of the Rollerama Rollerama has been open for quite some time, but how have they been able to stay open for so long? The manager of Rollerama said it's because of the atmosphere. 'I think it's just, it's a fun place for kids to go, and we hold people to a standard around here. There's rules that you abide by, and if you don't abide by those rules, then we let you know it's time to leave,' Thompson expressed. 'I've had generations of people come back and appreciate that fact. I've had even regular skaters that I see every week down here.' Story continues below Top Story: Iowa lawmakers issue statements marking end of 2025 legislative session Lights & Sirens: Sioux City man sentenced to 7 years in prison for child pornography Sports: Northwestern softball eliminated from NAIA Tournament with 10-2 loss to Marian Weather: Get the latest weather forecast here With almost six decades to prove the Rollerama's success, why does the popular establishment close during this time of the year? 'Quite honestly, [in] this business, the colder it is outside, the better we do,' Thompson explained. 'Once it gets to about mid-April, if we slow down significantly. There's too many other free things to do in town as far as, you know, baseball, soccer, going to the swimming pool, traveling with your family during the summertime.' During the pandemic, Thompson said it was a hard time for their staff and put a dent in their business, until ultimately deciding to close. 'Because of the different regulations they had going on one week, we had to follow one set of rules. The next week they changed their mind, and we'd have follow another set of rules. It just didn't make sense for us to be open,' she recalled. Those days are in the past, though, she said: 'The word is getting out again that, 'Hey, it's fun at Rollerama.' Some of the schools are coming back and doing private parties. School parties, which that's always a benefit to us. It kind of feeds the next generation of skaters and get them into the building. They have fun. They want to come back again.' Boyden-Hull School District sends off three, retiring teachers with celebration Thompson expressed why Rollerama is so special to her. 'It's really rewarding to hear those people that were part of that come back in here and talk about their fond memories of Rollerama, and tell us that they're bringing their grandkids here now and all that.' Rollerama will be closing for their season on May 17, but they'll be back open after Labor Day for their 60th season. Copyright 2025 Nexstar Media, Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.
The Sun
06-05-2025
- Entertainment
- The Sun
Three members of Sam Thompson's family snub new girlfriend Samie Elishi amid ‘tensions'
THREE members of Sam Thompson's family have snubbed his new girlfriend Samie Elishi amid apparent growing 'tensions.' The former I'm A Celebrity winner had been getting closer to the former Love Island star in recent weeks. 7 7 7 7 Over the weekend the loved-up pair were seen to be enjoying each other's company at Olivia Attwood 's birthday bash. During the party, the pair were spotted hand in hand as they danced together on Gabby Allen's story. Later, they were spotted sharing a steamy smooch in public together before making their way home. They were both beaming after the exclusive festivities as they walked down the street arm in arm. However, it seems there may be growing tensions behind the scenes as three members of Sam's inner circle have seemingly snubbed the star. The former Made In Chelsea star is known to share a very close bond with his sister Louise, 35, and her fiancé Ryan Libbey, 34. They even live next door to each other and the siblings regularly appear in each other's social media videos. Their mum Karen Thompson regularly posts images with her family as well as Sam's BFF, Pete Wicks. However, in an apparent snub, Louise, Ryan and Karen have not yet clicked the follow button on Samie's Instagram profile. Samie, 25, is also not following any of the trio in return despite her follower status for her new love. Loved up Sam Thompson and Samie Elishi seen holding hands in cute moment as they dance at party together It's somewhat ironic as we first revealed their romance, after Sam and Samie first swapped flirty messages after following each other on the platform. This comes as Sam squirmed when he was questioned on his new romance and was slammed as being 'defensive'. Pete Wicks, 37, was not afraid to stir the pot on the latest episode of their Staying Relevant podcast as Sam was left stuttering and lost for words. Giving their take on the party in their podcast which was recorded before the bash happened, Sam joked: "We are actually dating, but not each other." Timeline of Louis Tomlinson's love life Here we delve into Louis' love life since his rise to fame in One Direction. Hannah Walker - Louis' first girlfriend, who he dated in 2010. They split in 2011 as his band One Direction took off and the long distance romance was too much for them. Eleanor Calder - The pair dated on and off from 2011 to 2022. They were first photographed kissing at the London Olympic Games in 2012. Briana Jungwirth - Louis dated American Briana in 2015 and they have a son named Freddie, who was born in 2016. Sofie Nyvang - Louis was rumoured to be in a relationship with Danish model Sofie in February 2023. They split two months later in April 2023. Later, Pete said: "Now you've got a date for the night," which prompted Sam to clap back: "I don't have a f**king date for the night." The former TOWIE star interjected as he exclaimed: "Me," as Sam, clearly still on the back foot, said: "Right." Pete, then pressing the issue, quizzed: "Who did you think I meant?" to which Sam said: "No one." Pete, who had discussed how he organised Liv's event, then probed: "Why so defensive then? I was just talking about me." The Sun was first to report how I'm a Celeb winner Sam was moving on from his ex Zara McDermott, 28, after growing close to Samie. The documentary presenter in return has also found love again after her split, after she was spotted with former One Direction star Louis Tomlinson. 7 7
