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Doctors said my baby boy had colic – now he lives with a lifelong seizure disorder and too many brain tumours to count
Doctors said my baby boy had colic – now he lives with a lifelong seizure disorder and too many brain tumours to count

The Sun

time21-06-2025

  • Health
  • The Sun

Doctors said my baby boy had colic – now he lives with a lifelong seizure disorder and too many brain tumours to count

WHEN five-month-old Thomas Ward began screaming inconsolably on Valentine's Day in 2012, doctors told his mum Philippa that he likely had colic and might be teething. Nine days later, 'the bottom fell out' of Philippa's world when her son was diagnosed with a genetic disorder that causes tumours to form on numerous organs, including the brain. 6 Thomas is now 13 and has "more tumours than doctors can count". His devastating condition impacts nearly every aspect of his life, causing developmental delays, terrifying three-hour seizures, and the need for a wheelchair. Here, Philippa, 47, a communications professional from York, tells their story… 'YOU can't possibly think Thomas is having seizures, can you?' I will never forget the response from the out-of-hours doctor when I took my then-five-month-old son to the hospital one weekend in February 2012 after he began behaving unusually, crying incessantly and making strange, jerky movements. We were dismissed and told it was likely a simple case of colic - when a baby cries a lot but there is no obvious cause - or that he might be teething. Unhappy with this outcome, and as the symptoms continued, a few days later I took Thomas to see our local GP. She agreed he was behaving unusually and wrote to the paediatrician at the local hospital. There was no indication that Thomas had a medical problem that needed to be urgently addressed, but my instincts told me otherwise. The following day, I packed a bag, took my older son Ben to nursery and walked to A&E with Thomas. As soon as the doctor saw him, he diagnosed Thomas with infantile spasms - a rare and damaging form of epilepsy. He then revealed my wonderful little boy might have tuberous sclerosis complex (TSC), but he would have to be transferred to a larger hospital for an MRI scan to confirm the diagnosis. It was a terrifying time. February 29 is recognised around the world as Rare Disease Day, and it also happens to be the day Thomas was officially diagnosed with TSC, which causes tumours to form on the eyes, heart, kidneys, skin, lungs and brain. My legs gave way when we found out. It felt as though the bottom had fallen out of my world. My husband David and I learned that our son had numerous tumours on his brain and that they could cause cognitive impairment, developmental delays, behavioural problems, autism spectrum disorder, and seizures, which often cannot be adequately controlled using standard medications. We were also told that there are no approved therapies that address the root cause of TSC, so our only care options for Thomas were various therapies, symptom-based medications and possibly surgery. The days that followed were a blur. 6 6 Despite an estimated one million people living with it worldwide, TSC is classified as a rare disease. If Thomas hadn't been diagnosed with it, I'd probably never have heard of it myself. Thomas underwent a few more tests before being discharged from hospital. As we were leaving, the neurologist handed us a leaflet from the Tuberous Sclerosis Association (TSA) - the UK charity dedicated to helping families affected by TSC. It felt like a strange consolation prize after receiving such a massive, life-changing diagnosis, but it became a lifeline, signposting to many of the resources and support available to us. We also joined a newly-formed Facebook group for other parents of children with TSC, and through that met some people who have gone on to become friends. But TSC continues to affect us every single day. Thomas is now 13, and like many people with TSC, he experiences seizures most days. At one point, Thomas was having up to eight seizures a day. Today, he typically still has at least one, usually right after waking up. They can last up to three hours at a time. He is not able to verbally communicate and has delayed motor skills. He often uses a wheelchair for outings to ensure his safety. Thomas requires regular medical scans and monitoring to track his tumours - there are now too many on his brain to count. He has been on numerous anti-epileptic medications, but none have fully relieved him from the exhausting seizures. TSC has put our entire family on a rollercoaster ride. As parents, there has been so much to learn about having a child with complex medical and developmental needs. FAMILY IMPACT It is especially difficult for us to witness the effect on our elder son, Ben. By age three, he could recognise a seizure and learned to alert us if Thomas was having one. There is nothing more heartbreaking than hearing a toddler shout: 'Seizure, seizure!' Ben, now 15, is very aware of his brother's needs. He understands the importance of being quiet in the evenings so Thomas can sleep. There are many activities we can't do as a family due to safety and accessibility issues. As a young carer, Carers UK provides him with support and resources when needed. 6 6 Despite the challenges Thomas has faced throughout his life, he remains a lovely young man with a vibrant personality and clear passions. He is a remarkable problem solver and even though he cannot speak, he is able to communicate very effectively when he wants something. He's a gentle and affectionate soul and a joy to be around. Thomas' favourite foods are chips, toast and avocado - he also loves ketchup and mayonnaise. He enjoys going on train rides, car journeys, watching YouTube videos and listening to music. His favourite person in the world is his big brother. One of the most important things we've learned since Thomas' diagnosis is the importance of community, especially one that understands your unique circumstances. What is tuberous sclerosis complex? ABOUT one million people worldwide are living with tuberous sclerosis complex, and up to 11,000 are diagnosed in the UK. It causes non-cancerous tumours to grow on the brain, as well as the eyes, heart, skin, kidneys and lungs. These tumours, which impact the central nervous system, can result in cognitive impairment, developmental delays, behavioural problems, autism, and seizures, which often can't be controlled by standard medicines. The condition can also cause skin abnormalities (such as patches of light-coloured or thickened skin, or red acne-like spots on the face), breathing difficulties, hyperactivity, kidney issues and a build-up of fluid on the brain. TSC is present from birth, although it may not cause obvious problems immediately. It is caused by changes in either the TSC1 or TSC2 gene, which are involved in regulating cell growth. There is no cure, but medicine, surgery and educational support can help. Many people with TSC will have a normal lifespan, although a number of life-threatening complications can develop. These include a loss of kidney function, a serious lung infection called bronchopneumonia and a severe type of epileptic seizure called status epilepticus. Patients may also have an increased risk of developing certain types of cancer, such as kidney cancer, but this is rare. Source: NHS Families impacted by serious conditions, especially rare diseases, often find themselves feeling isolated and alone in the weeks and months following a diagnosis. We are hugely fortunate to have our own family close by, and they are a great support to us, as is the wider TSC community around the UK and beyond. Since Thomas' diagnosis, I have done everything in my power to advocate for TSC awareness. I took part in the Great North Run to raise money for the TSA, have spoken at conferences and awareness events, shared our family's story with my workplace, and advocated for the TSC community within the NHS. There are a number of messages that I hope people take away from our family's story. Firstly, research for rare diseases like TSC is critical. While only between 3,700 and 11,000 people in the UK are diagnosed with TSC, each of these diagnoses impacts everyone in the patient's life. 'On constant alert' Having a treatment for TSC would be amazing. Thomas' frequent seizures require everyone in our house to be on constant alert. It's not easy, but Thomas is a wonderful young man, and he makes it all worthwhile. We remain hopeful that there will one day be a treatment that can improve Thomas' quality of life - and ours. I also want to remind parents of children with TSC, or any rare disease, of the importance of living in the present. When your child is diagnosed with a condition like TSC, it's understandable to ask: Why does my child have this disease? What will our future look like? We immediately begin grieving the child we thought we would have. I still don't fully understand why Thomas has TSC, but David and I are able to find tremendous joy in our lives with our son every day. The best things we can do are keep him safe, meet him where he is, help him enjoy life, and love every part of who he is. I look forward to the day when Thomas and others with TSC can access safe and effective treatment options. Until then, I am committed to making the world more inclusive and understanding. When it might not be colic ALL babies cry, but one may have colic if they cry for more than three hours a day, three days a week for at least one week. It may also be colic if, while they are crying: It's hard to soothe or settle your baby They clench their fists They go red in the face They bring their knees up to their tummy or arch their back Their tummy rumbles or they're very windy Colic is common, affecting up to 40 per cent of babies, and it usually stops by the time babies turn three or four months old. But there are other reasons your baby may be crying. These include: hunger, a dirty nappy, wind, reflux and constipation. Call NHS 111 or see a GP if: You're worried about your baby's crying Your baby has colic and nothing seems to be working You're finding it hard to cope Your baby is not growing or putting on weight as expected Your baby still has symptoms of colic after 4 months of age Go to A&E or call 999 if: Your baby has a weak or high-pitched cry Your baby's cry does not sound like their normal cry You know better than anyone else what your child is usually like. Trust your instincts if you think something is seriously wrong, particularly if they have other worrying symptoms. Source: NHS

Serial sex predator back on the prowl after prison chiefs give him second chance
Serial sex predator back on the prowl after prison chiefs give him second chance

Sunday World

time09-06-2025

  • Sunday World

Serial sex predator back on the prowl after prison chiefs give him second chance

Remorseless attacker knocked one woman's teeth out and grabbed another by the genitals Thomas Ward has been told he's not welcome back to Coalisland One of Ulster's most dangerous sex predators is back on the prowl after prison chiefs deemed him worthy of a second chance. Thomas Ward was fast-tracked into a pre-release programme in 2023 but he breached the terms of his release and was thrown back into jail. In 2011 a judge deemed Ward, who is now aged 37, to be so dangerous he was ordered to serve an indeterminate jail term for a second sick sex attack on a woman. But five years before that Ward kidnapped a 45-year-old woman and sexually assaulted her and tried to rape her – knocking out her teeth during the savage attack. We can reveal that remorseless sex attacker Ward is now back on the streets after he was given a second chance at serving the last few months of his sentence in Burren House. Burren House holds up to 20 prisoners in unlocked cells at a site in the grounds of the old Crumlin Road jail in Belfast and inmates are allowed to leave the unit during the day and even have jobs. Recently we revealed a list of killers and other life-sentence prisoners who are due to be either released completely or are due to be sent to Burren House – the Northern Ireland Prison Service's 'open prison' unit designed to prepare lifers for permanent release They include monsters like Stephen 'Bulldog' Scott who hacksawed his pregnant teenage girlfriend Sylvia Fleming after he'd murdered her in 1998, and Andrew Robinson, jailed for life for stabbing his fiancée, Julie-Anne Osborne, nearly 50 times in 2001. Burren House holds up to 20 prisoners in unlocked cells Security sources have told the Sunday World they want a review of the process, pointing out how some prisoners have been moved there multiple times despite their rule-breaking while others who are well behaved never get a chance. Despite his disgusting crimes and rule breaches, Ward has been deemed safe to be set loose on the streets. As part of his first release programme back in 2023, Ward has been on several UTRs (unaccompanied temporary releases) with family. He has also been approved access to female relatives despite being a danger to women and being deemed the most high-risk level of sex offender. 'Here's another one who has breached the rules and been sent back but is getting another chance,' said a prison insider. 'He's a thug too – he was notorious for picking on other inmates and beating them up. He was even done for attacking a prison officer ten years ago so it's not like he's been a model prisoner. 'It's another example of someone getting preferential treatment for some reason while other prisoners who do behave never get a chance.' When he was first listed for release to Burren two years ago, members of the Traveller community, of which Thomas Ward belongs, made it clear he wasn't welcome back in Coalisland where he had lived before. In February 2011, Ward followed and attacked a woman as she jogged through Cookstown in a terrifying repeat offence. After grabbing the woman by her genitals, he then chased her down the street. The shocking incident – caught on CCTV – happened in broad daylight and police caught him shortly afterwards in a Tesco car park. The woman told police she only escaped his attack when she fled into a house. Judge David McFarland ordered that Ward serve an indeterminate prison sentence with a minimum of two years and only to be released when he is no longer thought to pose a risk of reoffending. But the husband of his first victim – who Ward tried to rape in 2006 – told us there should never have been a second. Thomas Ward has been told he's not welcome back to Coalisland ui Ward had already served two years of a five-year sentence for another serious sex attack in 2006 before he was released into the public again as a Category Three offender – the most dangerous on the scale. In 2010 the husband of that victim told the Sunday World that Ward would strike again and should never have been released. Speaking at the time, the man said: 'That animal will attack another woman I have no doubt about it.' As it turned out he did strike again and appeared in court just a few days after our article appeared when he attacked the female jogger in Cookstown. 'Ward should never have been out free to attack this poor woman,' said the man, who asked not to be identified to protect his wife. 'This time they should lock him up and throw away the key – he's an animal. He wrecked my wife's life and all he served was two-and-a-half years of a five-year jail sentence.' Ward assaulted the man's wife after he had kidnapped her in Coalisland. He held the 45-year-old woman against her will and knocked out her teeth during the savage attack. As well as sexual assault, Ward was also convicted of kidnapping and causing his victim actual bodily harm. The attack only ended when his victim wrapped her handbag around her fist and hit him before biting his fingers. She then ran in the dark through a wooded area and managed to flag down a passing female motorist.

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