Latest news with #ReverseRett
The Herald Scotland
07-06-2025
- Health
- The Herald Scotland
Former Kilmarnock player tackling jungles and deserts to help daughter
The former midfielder has made his peace with the fact that his daughter will never date a boyfriend, never get married, never have children or find an escape from the 50 different symptoms associated with a debilitating illness. The one thing he can't accept is the impotence of sitting around, doing nothing. His solution is extreme in a very real sense. To raise money for the Reverse Rett charity, 56-year-old 'Mavis' completed the infamous Marathon des Sables over seven days of gruelling heat then finished third in the 230-kilometre Ultra Marathon in Peru last year. On Saturday he tackles the 104-mile Ultra Scotland event between Dalry and Melrose and while his fundraising efforts have contributed over £100k to the search for a cure, the benefits to his own state of mind have been equally undeniable. 'I always say to people that Dionne's condition has given me some unbelievable life experiences and made me realise what's important in life,' he tells Herald Sport. 'Ordinarily I would have never have done the events I've done. Subconsciously I think it also became a substitute for me for the loss of football as well. I played for 21 years and from the age of 22, I started to train every day as if I was contesting a World Cup final.' He retired from playing for St Mirren in 2006 and found coaching an unfulfilling experience. Managing two Subway stores in Coatbridge and Bellshill failed to fill the void left by professional football. In 2008 the credit crunch came along and swallowed up the profits. A neighbour flagged up a recruitment drive by Police Scotland and, after 15 years on the thin blue line, he accepted a role with a London-based charity supporting survivors of human trafficking. His work provides a constant reminder that everyone has their crosses to bear. 'Dionne was 11 months old and there was no sign of crawling or walking before she started refluxing and being sick 20 or 30 times a day,' he recalls of the period when he realised his daughter was ill. Regular visits to the Royal Hospital for Sick Children in Glasgow and Wishaw General failed to come up with a conclusive diagnosis. A breakthrough came, unexpectedly, during a family holiday in Florida when he googled neurologists and found one 30 minutes away. Costing £800, tests and blood samples came back showing that Dionne had a rare genetic neurological and developmental disorder which affects the way the brain develops. Primarily found in females Rett Syndrome causes a progressive loss of motor skills and language. Reverse Rett is a research organisation focussed on delivering treatment to sufferers. While they can do little for Dionne in the here and now, Reilly's quest for a future breakthrough has brought some startling and unexpected life experiences. 'Originally I started doing the events to raise awareness for the charity and for Dionne,' Reilly explains. 'But through that I discovered that I was getting something from it as well. 'You can never replace the adrenaline of playing on a Saturday, but the illness gave me a purpose and incentive to keep fit and healthy and switch from a team event to seeing how far I could push myself.' He began modestly with a Glasgow 10k in 2012 before moving on to the Three Peaks Challenge, spanning Ben Nevis, Scaffel Pike in the Lake District and Snowdon in Wales over the course of 24 hours. A formidable challenge to even the toughest of mortals, Reilly was convinced to go higher, harder. Read more: Malky Mackay on Hibs' £5m chance, training-ground plan and the Black Knights Stephen McGowan: Is Dermot Desmond absentee landlord or Celtic mastermind? Incorporating a 2.4-mile swim in open water, 112 miles on a bike, then a marathon, Iron Man events offered an immediate challenge. He couldn't swim and hadn't cycled since the age of 10. Signing up to a swimming club and purchasing an aluminium bike for £500, he completed two Iron Man events before setting his sights on the legendary Marathon des Sables, a 160-mile ultramarathon held every year in the Sahara Desert. 'There was a freak heatwave and the temperatures were almost 60 degrees centigrade every day,' he recalled. 'A French competitor died on day two and one of my tent mates suffered a cardiac arrest. He was dead for two minutes before they managed to bring him back.' Even a brutal test of endurance failed to tick off all the boxes on the bucket list to end them all. Last year he ran 230 kilometres through the Amazon Jungle in Peru and finished third. 'Prior to the year I did it, only 15 per cent of the competitors finished it,' Reilly explains. 'Day two we hit the jungle and day three was incredible. We went through a protected area where less than 50 westerners had ever ventured. 'One of the reasons for that is that they have a protected species of bat, with only six of them left on the planet. 'We stayed that night with a small indigenous tribe in the jungle. Only 12 people in the whole world spoke the tribe's language. You would put your hammock up and sleep dangling between a couple of trees.' His Just Giving efforts have now raised over £60,000. His autobiography and other initiatives bolster the tally to something in the region of £100k and on Saturday he plans to raise the tally a little more by completing 104 miles and four marathons on the Southern Upland Way between Dalry and Melrose in the Ultra Scotland race. It's a long way from his old, distant life as a professional footballer with Motherwell, Killie, St Johnstone and St Mirren. 'I was at Killie 11 years or so and I had my best memories at Rugby Park, winning the Scottish Cup. But I hardly watch any games on TV these days,' he says. Gathering dust in the attic, he gifted his Scottish Cup jersey and medal away to a diehard Kilmarnock fan and gave a Kaiserslautern jersey acquired after a UEFA Cup defeat in 1999 to a roofer working on his home. 'The experience and the memories sustain me more than souvenirs,' he explains. 'Going down John Finnie Street with the cup and seeing people happy is what I think of. 'Kilmarnock still ask me to do the in-house TV channel and the truth is that I barely know the players. I loved my career and gave it everything and I don't know if subconsciously this is just the way I cope with the loss of that, but I couldn't tell you the last live game I was at or the last 90 minutes I watched on TV. 'I love my boxing now and if you gave me the choice now of watching the Champions League final or a big title fight, I'd watch the boxing.' Mark Reilly will complete the Ultra Scotland race today (Saturday 7 June 2025). To support his fund-raising efforts for Rett Syndrome research visit
Daily Record
23-04-2025
- Health
- Daily Record
Mother's agony as daughter lost ability to walk and talk overnight
Poppy Allard, now 10, was born a seemingly healthy baby and was babbling and picking things up as expected, when, at around 15 months, her behaviour suddenly changed A single mother was left feeling as though she "lost (her) daughter overnight" after her young girl developed a rare disorder that has imprisoned her in her own body, making it impossible for her to walk or talk. Poppy Allard, who is now 10 years old, seemed to be a perfectly healthy baby initially—babbling and reaching developmental milestones—until she hit 15 months, and her behaviour took a drastic turn. Mum Victoria, a 41-year-old, recalled how "alarm bells rang out" when Poppy ceased vocalising, stopped responding to her name, and lost hand functions. The young girl was then taken to the Clinical Genetics department at Guy's Hospital in London, where, at two years of age, she received a diagnosis of Rett Syndrome, an untreatable condition impacting brain development that occurs in about one in every 10,000 girls born each year, per NHS figures. Rett Syndrome primarily affects girls and leads to significant mental and physical disabilities. However, patients maintain their cognitive abilities, effectively leaving them conscious but trapped within non-responsive bodies. In a bid to support her niece, Victoria's sister, Hannah Prebble, is setting out on an epic endeavour to swim, cycle, and run a combined distance of 200km over the course of a month, all to raise funds for Reverse Rett, a UK charity dedicated to finding treatments and ultimately a cure for Rett Syndrome. Victoria, whose second child Daisy is 13 years old, shared her distressing experience: "Poppy was about a year old and everything up until that point seemed absolutely normal. All her milestones were coming up as you would expect ... I didn't really think for a minute that there was any problem. One minute, I had this really smiley, babbling baby, and then the next day, it was like she was gone." Born in 2014, Poppy initially appeared to be a perfectly healthy baby. "She sat up, she was very engaging, she started to smile and babble," recounted Victoria, who is from near Folkestone in Kent. "She was using her hands to play with toys and pick tiny things up that she found in the carpet that she was not supposed to. I didn't really think for a minute that there was any problem." However, a few months after celebrating her first birthday, an alarming change occurred. Although Poppy stopped progressing at around a year old, at 15 months, there was a noticeable regression. "As she passed the year mark... she sat up, but did not move and we were not getting any more development with her motor skills, so she didn't start to pull herself up on furniture and things like that," explained Victoria. "And then on that particular day, it was almost like I lost her overnight, she suddenly just stopped engaging. "She stopped looking at me, she didn't answer her name – she wasn't making any noises. It was quite terrifying because that's when it really hit that something very serious was wrong." Rett Syndrome often reveals itself after six to 18 months of age, with children losing previously acquired skills and ceasing to reach new milestones. When Poppy began showing worrying signs, she was first sent to a physiotherapist, who hinted at a possible genetic or chromosomal disorder due to her low muscle tone. Victoria recalled the moment of realisation: "That's when it hit me like a bus, and I started to realise that she probably wasn't going to be a typical child in the sense that we see a typical child, and that was very emotional." She described the period of waiting for a diagnosis as a "harrowing time, with many sleepless nights". Seizures are a frequent symptom of Rett Syndrome, and Poppy had her first one at three years old, though they've been relatively rare. "I was actually driving in the car and she was in the back of her car seat, her eyes rolled to the back of her head and she became very, very vacant," recounted Victoria. "I think she stopped breathing momentarily and she was very pale." Victoria expressed that it is both a "blessing and a curse" that "cognitively, she's like an average child" who grasps things easily, noting that it's a "really common misconception" that children with Rett Syndrome can't have strong cognitive abilities. To communicate, Poppy uses Eye Gaze technology, which allows her to select symbols on a screen with her eyes. "Her communication has returned – as much as it's not typical, I know exactly what she wants, I know exactly what she needs," Victoria commented. This summer, Poppy is set to undergo surgery on both hips and will eventually have metal rods inserted into her spine, as she has developed scoliosis. Victoria, who is a single mother caring for Poppy and her other child Daisy, described the experience as "extra scary", despite support from her parents. "For example, if her health really deteriorates and something happens which means that she needs to be cared for 24/7, or she couldn't go to school, then I don't know where that leaves us as a family financially and how we would manage," she disclosed. "Basically, it makes all of the uncertainties of the condition a lot worse I think, because if there's someone working with you as a team to do things together, it's very different. We don't know what the future holds. We don't know what's coming, but we just have to kind of roll with it and deal with what happens as it comes." Poppy's delightful character, however, has captured the affection of healthcare professionals and others who have contributed to her progress. Victoria affectionately described her as "a ray of sunshine, because despite everything that she has to face and everything going on for her, she's so cheerful," and continued: "She wins the hearts of people that she meets... people want to work hard to look after her because of how bright her personality shines through." Victoria expressed her deep gratitude towards her sister for raising funds for Reverse Rett, stating: "It really means a lot to me." For more information about Hannah's fundraising efforts, visit
Daily Mirror
23-04-2025
- Health
- Daily Mirror
Mum 'lost daughter overnight' after she 'just stopped'
Poppy Allard, now 10, was a healthy baby and was babbling and picking things up as expected, when, at around 15 months, her behaviour suddenly changed A single mum has shared her heartbreak over how she "lost (her) daughter overnight" when her little girl developed a rare disorder that has left her unable to walk or talk. Poppy Allard, who is now 10 years old, appeared to be a perfectly healthy infant, hitting all the usual milestones until she was about 15 months old, when her condition took a dramatic turn for the worse. Mum Victoria, a 41-year-old nurse, recalled how "alarm bells rang out" as Poppy ceased making sounds, stopped responding to her name, and lost hand function. After being referred to Clinical Genetics at Guy's Hospital in London, Poppy received a diagnosis of Rett Syndrome at two years old. This incurable condition affects brain development and strikes approximately one in every 10,000 girls born each year, as per NHS data. Rett Syndrome predominantly impacts girls and leads to profound mental and physical disabilities. Despite this, individuals with Rett Syndrome maintain their cognitive abilities, effectively becoming prisoners within their own unresponsive bodies. In an inspiring act of solidarity and support, Victoria's sister Hannah Prebble is embarking on a gruelling 200km triathlon challenge over a month to fundraise for Reverse Rett, a British charity dedicated to finding treatments and ultimately a cure for Rett Syndrome. Victoria, also mother of 13-year-old Daisy, recounted the heart-wrenching change in her youngest daughter: "Poppy was about a year old and everything up until that point seemed absolutely normal. All her milestones were coming up as you would expect ... I didn't really think for a minute that there was any problem. One minute, I had this really smiley, babbling baby, and then the next day, it was like she was gone." Initially, Poppy, who was born in 2014, appeared to be developing like any healthy child. Victoria, from near Folkestone in Kent, said: "She sat up, she was very engaging, she started to smile and babble. She was using her hands to play with toys and pick tiny things up that she found in the carpet that she was not supposed to. I didn't really think for a minute that there was any problem." However, a few months past her first birthday, Poppy's development took a distressing turn—she stopped making progress at around one year and regressed at 15 months. "As she passed the year mark... she sat up, but did not move and we were not getting any more development with her motor skills, so she didn't start to pull herself up on furniture and things like that," said Victoria. The situation abruptly worsened, leaving Victoria shaken: "And then on the particular day, it was almost like I lost her overnight, she suddenly just stopped engaging." The alarming deterioration led to panic and fear, as Victoria noticed drastic changes: "She stopped looking at me, she didn't answer her name – she wasn't making any noises. It was quite terrifying because that's when it really hit that something very serious was wrong." Rett Syndrome usually manifests between six to 18 months of age, with children often losing previously acquired skills and failing to reach further developmental milestones. When Poppy began showing concerning symptoms, she was initially referred to a physiotherapist who suggested a potential genetic or chromosomal disorder due to her low muscle tone. Victoria recalled the moment of realisation that Poppy might not develop like other children as hitting her "That's when it hit me like a bus, and I started to realise that she probably wasn't going to be a typical child in the sense that we see a typical child, and that was very emotional,". She described the period of waiting for a diagnosis as a "harrowing time, with many sleepless nights". Seizures are a common symptom of Rett Syndrome, and Poppy had her first seizure at three years old, although they have been relatively infrequent since then. "I was actually driving in the car and she was in the back of her car seat, her eyes rolled to the back of her head and she became very, very vacant," Victoria recounted. "I think she stopped breathing momentarily and she was very pale." Victoria described it as both a "blessing and a curse" that Poppy is cognitively similar to an average child, understanding things easily. She added that it's a "really common misconception" that children with Rett Syndrome can't possess strong cognitive abilities. To communicate, Poppy uses Eye Gaze technology, which involves looking at symbols on a screen. Victoria, Poppy's mother, shared: "Her communication has returned – as much as it's not typical, I know exactly what she wants, I know exactly what she needs." Poppy is scheduled for hip surgery this summer and will have metal rods inserted into her spine in the coming years due to scoliosis. Being a single mum to Poppy and her other child Daisy has been "extra scary", Victoria admitted, despite receiving support from her parents. She expressed her concerns about potential health deterioration that could require round-the-clock care or prevent Poppy from attending school, saying: "For example, if her health really deteriorates and something happens which means that she needs to be cared for 24/7, or she couldn't go to school, then I don't know where that leaves us as a family financially and how we would manage. "Basically, it makes all of the uncertainties of the condition a lot worse I think, because if there's someone working with you as a team to do things together, it's very different. We don't know what the future holds. We don't know what's coming, but we just have to kind of roll with it and deal with what happens as it comes." However, Poppy's "very special personality" has endeared her to healthcare professionals involved in her care. Victoria affectionately refers to her daughter as a "I call her a ray of sunshine, because despite everything that she has to face and everything going on for her, she's so cheerful. She wins the hearts of people that she meets... people want to work hard to look after her because of how bright her personality shines through." Victoria expressed her deep gratitude towards her sister for raising funds for Reverse Rett, stating, "It really means a lot to me," For more information on Hannah's fundraising efforts, visit
