Latest news with #Hirschsprung'sDisease
CTV News
2 days ago
- Health
- CTV News
‘Time is of the essence': Local mother calls for expanded pediatric services
An Amherstburg mother is hopeful pediatric care in Windsor will expand once the new acute care hospital is built. 'Our area is growing by leaps and bounds,' said Kait Lowe, founder of Parents for Critical Pediatric Care Windsor. 'This is a real opportunity to have a pediatric emergency department, to have a pediatric critical care unit with more surgeons who are here full time, not just visiting surgeons for pediatric surgeries.' Her son, Sully, 4, was diagnosed with Hirschsprung's Disease at two-days old. Baby Sully Windsor pediatric care Baby Sully. (Source: Kait Lowe) 'His disease means that you're born without being able to go to the bathroom properly,' she told CTV News. 'His bowels could rupture at any moment. Time is of the essence.' Sully and his family regularly travel to London for specialized treatment. Lowe has spent the last four years advocating for expanded pediatric services in Windsor-Essex. 'When kids are critical, they sometimes don't have time to make it to London or Toronto,' Lowe explained. Baby Sully Windsor pediatric care Kait Lowe and her son, Sully. (Source: Kait Lowe) Windsor Regional Hospital officials have said in the past specialist pediatric services are not provided because the volume of cases in this area is too low to warrant it. 'As we have said on multiple occasions, WRH is always interested in expanding programs and services, but only where patient volumes would safely support those additions,' Dr. Sajit Augustine, chief of the Department of Pediatrics. 'We will advocate for funding to support expanded or new programs where the volumes warrant. However, there are many specialized cases where, for the safety of the patient, services are better provided where there is expertise and more common clinical practice, such as specialized pediatric care in London.' The hospital does provide a Pediatric Emergency Diversion Service that operates seven days a week. 'The pediatric program has experienced significant growth recently. In the past year, we recruited three new pediatricians and a pediatric oncologist,' said Augustine. 'Over the last three years, we have added eight new pediatricians to our team. Additionally, we are actively working on recruiting a pediatric cardiologist. We have established a Pediatric Virtual Care program with the London Health Sciences Centre, making it the first of its kind in Ontario West.' Augustine added that WRH plans to add the Pediatric Virtual Care program to the emergency department soon. 'Since its inception, our after-hours emergency department diversion program has provided rapid, timely, and specialized pediatric care to over 5,000 children,' he said. 'We remain committed to improving access to pediatric care, expanding our services, and delivering care closer to home.' Lowe hopes the new acute care hospital will bring change. 'It's an opportunity to have a full-time pediatric oncology unit,' she said. 'It's an opportunity to have a pediatric medical unit with more specialist.' Construction on the $2 billion project is expected to begin in 2026 with a completion date of 2031.
Rhyl Journal
5 days ago
- Health
- Rhyl Journal
Reporter Arron Evans to take on walk for Ronald McDonald House charity
Arron Evans, from Anglesey, works as a Digital Reporter for The Leader, covering stories in Flintshire and Wrexham. During his eight-and-a-half years working as a journalist, he has also worked for the North Wales Chronicle, North Wales Pioneer, Rhyl Journal and Denbighshire Free Press. On April 20 of last year, Arron's and wife Georgina's son Ffredi was born at Ysbyty Gwynedd Hospital in Bangor. Although it looked as though he was initially doing really well, it later became apparent that his bowel was not working as it should be. After two days, Ffredi was transferred to Alder Hey Hospital in Liverpool and over the course of eight days he was treated by the incredible surgical and neonatal teams in neonatal ICU. He was then diagnosed with Hirschsprungs - a rare congenital disease that affects around 200 babies and children a year in the UK (1 in 5,000). For Ffredi and other children with Hirschsprungs disease, their large intestine doesn't work in the way it should, meaning that the bowel can become blocked and result in a very serious infection. In August of last year, Ffredi underwent surgery at Alder Hey Hospital, where he was fitted with a stoma. Since then, the family has been back and fourth between Anglesey and Liverpool as Ffredi has appointments and has dealt with various illnesses. To show their appreciation for the hospital's support, the family organised a charity football match, which raised over £2,000. Now, it is the turn of the Ronald McDonald House Charities to benefit from their fundraising. On Sunday, September 14, Arron and friend Jacob Sznober will be walking from South Stack (Holyhead) to Penmon Lighthouse on Anglesey - a distance of around 34 miles. They are aiming to raise £1,000 through their fundraiser, which can be donated to here. Arron said: "After raising over £2,200 for Alder Hey last year with a charity football match, I thought this time around it was important to highlight the great work being done by the Ronald McDonald team. "When my son Ffredi was born in April 2024, he was taken to Alder Hey soon after, and we soon discovered that he had a rare condition called Hirschsprung's Disease. Arron and friend Jacob Sznober will be taking on the epic walk in September. (Image: Newsquest) "While there, I was referred to the 'Mac House' which is located just yards away from the hospital in Liverpool. "That provided a free 'home away from home' accommodation to myself and to many other families with children having treatment at the hospital, helping to, in my case, ease the financial burden of making a four-hour round trip home and back day after day. "I have since stayed there many times while my son has received continuous treatment at Alder Hey and the team there have been nothing short of brilliant every time. "The work they do can often go under the radar - with houses offering much more than just a place to stay. They provide family activities, peer support, respite, and many other services. "This means that families can be by their child's bedside in a matter of moments, whilst maintaining a degree of normal life with reduced emotional and financial strain. "They help 6,000 families each year and now, more than ever, they need support. That's why I am supporting Ronald McDonald House this time around. Any donations would be greatly received!"
Leader Live
5 days ago
- Health
- Leader Live
Reporter Arron Evans to take on walk for Ronald McDonald House charity
Arron Evans, from Anglesey, works as a Digital Reporter for The Leader, covering stories in Flintshire and Wrexham. During his eight-and-a-half years working as a journalist, he has also worked for the North Wales Chronicle, North Wales Pioneer, Rhyl Journal and Denbighshire Free Press. On April 20 of last year, Arron's and wife Georgina's son Ffredi was born at Ysbyty Gwynedd Hospital in Bangor. Although it looked as though he was initially doing really well, it later became apparent that his bowel was not working as it should be. After two days, Ffredi was transferred to Alder Hey Hospital in Liverpool and over the course of eight days he was treated by the incredible surgical and neonatal teams in neonatal ICU. He was then diagnosed with Hirschsprungs - a rare congenital disease that affects around 200 babies and children a year in the UK (1 in 5,000). For Ffredi and other children with Hirschsprungs disease, their large intestine doesn't work in the way it should, meaning that the bowel can become blocked and result in a very serious infection. In August of last year, Ffredi underwent surgery at Alder Hey Hospital, where he was fitted with a stoma. Since then, the family has been back and fourth between Anglesey and Liverpool as Ffredi has appointments and has dealt with various illnesses. To show their appreciation for the hospital's support, the family organised a charity football match, which raised over £2,000. Now, it is the turn of the Ronald McDonald House Charities to benefit from their fundraising. On Sunday, September 12, Arron and friend Jacob Sznober will be walking from South Stack (Holyhead) to Penmon Lighthouse on Anglesey - a distance of around 34 miles. They are aiming to raise £1,000 through their fundraiser, which can be donated to here. Arron said: "After raising over £2,200 for Alder Hey last year with a charity football match, I thought this time around it was important to highlight the great work being done by the Ronald McDonald team. "When my son Ffredi was born in April 2024, he was taken to Alder Hey soon after, and we soon discovered that he had a rare condition called Hirschsprung's Disease. Arron and friend Jacob Sznober will be taking on the epic walk in September. (Image: Newsquest) "While there, I was referred to the 'Mac House' which is located just yards away from the hospital in Liverpool. "That provided a free 'home away from home' accommodation to myself and to many other families with children having treatment at the hospital, helping to, in my case, ease the financial burden of making a four-hour round trip home and back day after day. "I have since stayed there many times while my son has received continuous treatment at Alder Hey and the team there have been nothing short of brilliant every time. Read more "The work they do can often go under the radar - with houses offering much more than just a place to stay. They provide family activities, peer support, respite, and many other services. "This means that families can be by their child's bedside in a matter of moments, whilst maintaining a degree of normal life with reduced emotional and financial strain. "They help 6,000 families each year and now, more than ever, they need support. That's why I am supporting Ronald McDonald House this time around. Any donations would be greatly received!"
Rhyl Journal
01-05-2025
- Health
- Rhyl Journal
Family's website aims to raise Hirschsprung's awareness
Newsquest reporter Arron Evans and his wife Georgina, who live on Anglesey, welcomed son Ffredi Fôn into the world last April. However, although it looked as though he was initially doing really well, it later became apparent that his bowel was not working as it should be. After two days, Ffredi was transferred to Alder Hey Hospital in Liverpool and over the course of eight days he was treated by the surgical and neonatal teams in neonatal ICU. He was then diagnosed with Hirschsprung's - a rare congenital disease that affects around 200 babies and children a year in the UK (1 in 5,000). For Ffredi and other children with Hirschsprung's disease, their large intestine doesn't work in the way it should, meaning that the bowel can become blocked and result in a very serious infection. Now one year old and thriving, Ffredi has bravely adapted to life with an ileostomy, a life-changing surgery that was necessary. When he was first diagnosed, Arron and Georgina had never even heard of Hirschsprung's before. Sadly, this is the case for most people and it can be hard to know where to turn for information. That is why they have set up a new website - - in order to raise awareness of Hirschsprung's Disease and help others who have found or will find themselves in the same situations. Georgina said: "Before Ffredi's diagnosis, we had never even heard of Hirschsprung's Disease. It's been a huge learning curve, and we realised that other families might be going through the same thing without the right information or support. "We wanted to do something positive — to share our experience, and hopefully make a difference." The family's website offers clear information about the condition, shares Ffredi's personal story, and highlights the support available for families. They also hope to connect with medical professionals, other families, and members of the public who want to learn more and get involved. Georgina is further raising awareness of Hirschsprung's Disease through social media via Instagram: @livewithgeorgina - 282,000 views to date and TikTok: @livewithgeorgina - 701,000 to date.
North Wales Chronicle
01-05-2025
- Health
- North Wales Chronicle
Family's website aims to raise Hirschsprung's awareness
Newsquest reporter Arron Evans and his wife Georgina, who live on Anglesey, welcomed son Ffredi Fôn into the world last April. However, although it looked as though he was initially doing really well, it later became apparent that his bowel was not working as it should be. After two days, Ffredi was transferred to Alder Hey Hospital in Liverpool and over the course of eight days he was treated by the surgical and neonatal teams in neonatal ICU. He was then diagnosed with Hirschsprung's - a rare congenital disease that affects around 200 babies and children a year in the UK (1 in 5,000). For Ffredi and other children with Hirschsprung's disease, their large intestine doesn't work in the way it should, meaning that the bowel can become blocked and result in a very serious infection. Now one year old and thriving, Ffredi has bravely adapted to life with an ileostomy, a life-changing surgery that was necessary. When he was first diagnosed, Arron and Georgina had never even heard of Hirschsprung's before. Sadly, this is the case for most people and it can be hard to know where to turn for information. That is why they have set up a new website - - in order to raise awareness of Hirschsprung's Disease and help others who have found or will find themselves in the same situations. Georgina said: "Before Ffredi's diagnosis, we had never even heard of Hirschsprung's Disease. It's been a huge learning curve, and we realised that other families might be going through the same thing without the right information or support. "We wanted to do something positive — to share our experience, and hopefully make a difference." The family's website offers clear information about the condition, shares Ffredi's personal story, and highlights the support available for families. They also hope to connect with medical professionals, other families, and members of the public who want to learn more and get involved. Georgina is further raising awareness of Hirschsprung's Disease through social media via Instagram: @livewithgeorgina - 282,000 views to date and TikTok: @livewithgeorgina - 701,000 to date.
