Doctors said my baby boy had colic – now he lives with a lifelong seizure disorder and too many brain tumours to count
Thomas, now 13, has daily seizures - sometimes lasting up to three hours at a time - and uses a wheelchair
DEVASTATING IMPACT Doctors said my baby boy had colic – now he lives with a lifelong seizure disorder and too many brain tumours to count
Click to share on X/Twitter (Opens in new window)
Click to share on Facebook (Opens in new window)
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.
Sign up for Scottish Sun
newsletter
Sign up
6
Thomas has a genetic disorder which causes tumours to grow on his brain
6
Doctors initially told his mum Philippa that he likely had colic or was teething
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.
Mum shares red-flag warning sign on her baby's head that turned out to be meningitis - triggering 15 seizures
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
Philippa, from York, says her son's condition affects their lives every single day
6
Thomas now has 'too many tumours on his brain to count'
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.
There is nothing more heartbreaking than hearing a toddler shout: 'Seizure, seizure!'
Philippa Ward
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
The now-13-year-old has seizures every day, sometimes lasting three hours at a time
6
He is a 'lovely young man with a vibrant personality', his mum says
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.
Try Our AI Features
Explore what Daily8 AI can do for you:
Comments
No comments yet...
Related Articles
Scottish Sun
6 hours ago
- Scottish Sun
Doctors said my baby boy had colic – now he lives with a lifelong seizure disorder and too many brain tumours to count
Thomas, now 13, has daily seizures - sometimes lasting up to three hours at a time - and uses a wheelchair DEVASTATING IMPACT Doctors said my baby boy had colic – now he lives with a lifelong seizure disorder and too many brain tumours to count Click to share on X/Twitter (Opens in new window) Click to share on Facebook (Opens in new window) 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. Sign up for Scottish Sun newsletter Sign up 6 Thomas has a genetic disorder which causes tumours to grow on his brain 6 Doctors initially told his mum Philippa that he likely had colic or was teething 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. Mum shares red-flag warning sign on her baby's head that turned out to be meningitis - triggering 15 seizures 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 Philippa, from York, says her son's condition affects their lives every single day 6 Thomas now has 'too many tumours on his brain to count' 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. There is nothing more heartbreaking than hearing a toddler shout: 'Seizure, seizure!' Philippa Ward 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 The now-13-year-old has seizures every day, sometimes lasting three hours at a time 6 He is a 'lovely young man with a vibrant personality', his mum says 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.
Scottish Sun
7 hours ago
- Scottish Sun
New ‘Ozempic pill' is better than ‘skinny jabs' and helps you lose weight even faster, study suggests
The new weight loss pill has seen promising results and offers hope to millions WEIGH TO GO New 'Ozempic pill' is better than 'skinny jabs' and helps you lose weight even faster, study suggests Click to share on X/Twitter (Opens in new window) Click to share on Facebook (Opens in new window) A NEW 'Ozempic pill' leads to faster weight loss than the popular 'skinny jabs', studies have suggested. The new weight loss medication, which can also be offered by injection, can help patients lose a significant amount of weight. Sign up for Scottish Sun newsletter Sign up 1 The new weight loss pill has seen promising results in early trials Credit: Getty An early study found that patients who received amycretin as a weekly jab lost 24% of their body weight after 36 weeks of treatment. But initial trials assessing a tablet form of the jab saw promising results with patients losing an average 13% of bodyweight in just three months. This suggests the drug leads to greater weight loss than Wegovy, the 'sister jab' of Ozempic. Such treatments have been called transformative by NHS leaders. It's estimated that around 1.5 million Brits currently receive weight loss jabs through specialist weight loss services or private prescriptions. But weight pills offer a new hope to millions looking to lose weight as the injections put additional pressure on an overstretched NHS. However, further clinical trials are needed before the treatment can be made available in the UK. This could take several years and there's no guarantee that regulators will approve the use of the drug. Amycretin, made by Novo Nordisk, contains semaglutide, the same active ingredient as Ozempic and Wegovy and helps control blood sugar and appetite. It targets specific receptors in the body - the GLP-1 and amylin receptors - helping you feel full and stops overeating. An early trial published in The Lancet found that 125 adults taking weekly injections containing higher doses of the drug lost nearly a quarter of their body weight after 36 weeks. It also showed signs of improving blood sugar levels. However, there were some mild to moderate side effects including nausea and vomiting but these were resolved by the end of the treatment. Experts said that the medicine appeared "safe and tolerable" but further studies were needed to fully assess the drug. But a second trial, also published in The Lancet, assessed the drug in tablet form in 144 people. Those taking the highest dose of 100mg lost 13% of their body weight over four months. Weight Loss Jabs - Pros vs Cons The authors wrote: "Amycretin effectively lowered body weight and improved metabolic and glycaemic parameters in people who were overweight or obese. "Longer studies with more participants are warranted for evaluation of the safety and efficacy of amycretin in individuals living with obesity and type 2 diabetes, and to optimise the dosing regimen." As with the first trial, there were also some mild to moderate side effects including loss of appetite and similar gastrointestinal issues. It comes as a separate study examined the effects of the weight-loss jab, Wegovy, at higher doses. The researchers found that giving patients 7.2mg of Wegovy once a week led to an average weight loss of 21%, with a third of participants losing 25% of their body weight over 72 weeks. The studies were also presented to the American Diabetes Association's Scientific Sessions in Chicago.
Scottish Sun
7 hours ago
- Scottish Sun
Brit fighting for life after catching deadly disease on all-inclusive at hols hotspot
The Brit was rushed to hospital and put in an induced coma HOLS HORROR Brit fighting for life after catching deadly disease on all-inclusive at hols hotspot Click to share on X/Twitter (Opens in new window) Click to share on Facebook (Opens in new window) A BRITISH tourist is fighting for her life after catching a deadly disease while on her all-inclusive holiday in Greece. Donna Jobling, 57, from west Hull, came down with Legionnaires' disease on the island of Crete, and is in intensive care. Sign up for Scottish Sun newsletter Sign up 2 Donna Jobling, 57, of west Hull, is fighting for her life in hospital Credit: MEN Media 2 Donna was on holiday in Crete with her husband and two friends Credit: Getty She is receiving urgent treatment at Venizeleio Hospital in Heraklion after falling ill just days into the trip. Donna was holidaying with her husband Sidney and friends Paula and Nicolas Mason, also of Hull. The group had been enjoying a £1,500-per-couple all-inclusive trip when Donna fell ill. She developed a chest infection and needed lots of rest, and then became seriously ill two days later. Donna, who suffers from "complex" medical conditions including epilepsy, was taken to hospital on June 11 and doctors put her in an induced coma. Tests confirmed she had contracted Legionnaires' disease, which triggered acute respiratory failure and pneumonia. Her "devastated" family has flown out to be by her side. Neice Claire, 42, has been back-and-forth between Crete and Hull. She is currently in East Yorkshire to obtain Donna's insurance documents before flying back out. The couple was travelling with Easyjet. A spokesperson for the company said: "We're so sorry to hear that Ms Jobling is unwell, and we're continuing to support her and her family in every way we can. "As soon as we were made aware of reports of illness, we immediately took action and contacted customers who were already staying in the hotel, or due to travel in the next four weeks, to provide alternative hotel options." More to follow... For the latest news on this story keep checking back at The Sun Online is your go-to destination for the best celebrity news, real-life stories, jaw-dropping pictures and must-see video. Like us on Facebook at and follow us from our main Twitter account at @TheSun.
