Ollie returns to the pod to talk about a few important subjects as well as an update on his life since we last spoke a few months ago.
The episode will cover:-
Fitness tips from his aerobics classes
How a vegan diet for 2 weeks affected his Hirschsprung's
His new business venture to help women's fitness for both pre and post pregnancy
Please enjoy the episode
Follow Ollie - @bigfriendlypersonaltraining
Sandeep talks about his son's Hirschsprung's condition, we talk about diet, medicine and treatments.
This is a slightly shorter episode but it still packed with plenty of interesting topics that I hope you find very useful.
Enjoy the episode!
Stacey from Rare Patient Voice joins me to talk about the vital work that the company does in supporting rare and non-rare conditions.
We chat about how the business was formed and how it has grown many times over to be the world's leading medical research company.
Stay tuned to find out how you can be paid up to $120 for filling out a survey using my personal referral link below.
https://www.rarepatientvoice.com/rp/tomshirschsprungspodcast
Sarah talks about her son Remy and his experience with Total Colonic Hirschsprung's Disease. During the episode I also find out the family dynamic when it comes to Hirschsprung's, and why it was very surprising when the hospital dismissed Remy's chances of HD.
Around the mid-way point we chat about the Race for Every Child coming up on 18th October, which is a 5k event to raise money specifically for parents who need supplies such as Ostomy bags, sprays, wipes etc. - a very worthwhile cause indeed.
If you would like to donate please use the link below:-http://giving.childrensnational.org/goto/RemySchulzPlease
Enjoy the episodeFollow Sarah - @snovatt21
An inspirational story of resilience and perseverance continues, as Laura shares all about her latest business venture 'FYN Coaching' or 'Finish Your Now Coaching'
The passion for coaching and seeing others succeed is evident in Laura's voice from the outset, as she shares some learning experiences in the last couple of months since becoming qualified.
Join us again for part 5 in a few months time.
Follow Laura - @ibd.laura.fit
Paraglider and Metal Artist, Wim Predhomme joins me to talk through his life with Hirschsprung's, including some of the highs and lows that come along with the condition.
Wim chats through various parts of his life, including how he copes with everything that Hirschsprung's throws at him and his love of paragliding.Enjoy the episode
Follow Wim - @wimpredhomme
Some very important topics are discussed in today's episode, as I chat with Saffire about her daughters diagnosis of Hirschsprung's 9 months ago. During what was undoubtedly a very stressful and worrying time for all the family, the miscommunication between hospital staff was the last thing anyone needed.We also talk about parental mental health and how it can be affected by having a child with a chronic illness.Follow Saffire - @papasaff
Sadie joins me to talk about her 4 year son Cody and his Hirschsprung's story.
We start the story when Sadie is 10 weeks pregnant and she has a test for Cody that comes back as 1 in 8 chance of her son having Downs Syndrome.
With Cody being Sadie and Andy’s second child, she knew what to look for and could feel that things were not as they were supposed to be.
This all takes place during lockdown/covid times as Sadie and her husband Andy navigate the first few months of Cody's Hirschsprung's.
Follow Sadie - @sadegoldthorpe
We start this episode 7 months ago, Lexi has just given birth to her third child, Emmett and like many people, has no family history of Hirschsprung's and has never heard of the condition!
What follows is a roller-coaster week of emergency rooms, out of body experiences and a speedy trip to the NICU, with doctors 99% certain of Hirschsprung's.
A fascinating recount of the last 7 months, with lots of hope for the future.
Follow Alexa -
IG - @latelywithlexa
TikTok - @latelywithlexa
2 generations of Hirschsprung's are discussed with Kirstie and her daughter Aubrey, we mainly chat about Aubrey's journey with TIA (Total Intestinal Aganglionosis)
Aubrey chats about her condition, including how she explains Hirschsprung's to her friends and her admiration for a fellow Hirschsprung's warrior - Zoe Colletti.
Please enjoy the episode
Follow Kirstie - @Kirstie8811
Kelly chats to me about her son Kellen, who has Hirschsprung's and is 7 and half years old.
In this episode we discuss the vital importance of mothers intuition and the need for this intuition to be addressed, with Kelly's son not being diagnosed until exactly 13 months of age.
We also discuss Kelly's journey to find treatment as well as the events that led to the decision to have the MACE (ACE Malone) surgery
Please enjoy the episode
Follow Kelly:-Instagram - @kelly_kronowski
TikTok - @kellyk6212
Gemma and Carl discuss 3 generations of Hirschpsrung's with a surprise genetic twist!Carl, Gemma and Gemma's daughter Jessica all have Long Segment Hirschsprung's despite Gemma being the oldest of 6 children and Jessica being the youngest of 3.They talk about their lives and how Hirschsprung's has affected them in different ways.
Follow Gemma:- @nelliesartist
I'm joined by Anna, this time from America.
Anna talks through her son's journey with short segment Hirschsprung's Disease and we cover a wide range of topics throughout the hour + long episode.
Topics will include:-
- Mothers intuition
- Seeking quality care
- Different treatment paths
- The importance of community support
Please enjoy the episode
Follow Anna - @themosthopelesstourguide
Starting straight from the of the last episode, when Amy's daughter had her stoma fitted we talk about how stoma care differs from country to country.
With the first 6 months being incredibly difficult Amy discusses how important having a support system is whilst abroad, Amy uses her knowledge as well as her medical friends and family to achieve the best outcome for her daughter.
Please enjoy the episode
Follow Amy - @lifeofamy34
China is our next stop as I chat with Amy all about her daughter's diagnosis of Hirschsprung's Disease from Zambia to China via the UK.
From doctors being puzzled as to what might be wrong to having to adjust to the Zambian healthcare system, this two part special goes through a variety of situations.
Please enjoy the episode
Follow Amy - @lifeofamy34
In todays episode, conducted from the hospital room, Kaitlyn chats to me about her 5 year old daughter, including topics such as diet, Hirschsprung's resources, procedures and parental health.
Kaitlyn explains the journey that her family have been on as well as sharing a wider perspective on their Hirschsprung's experience, both positive and negative.
Please enjoy the episode
Follow Kaitlyn
TikTok - @mamaslaughter
Libby shares the story of her 2 year old daughter with Hirschsprung's from the very start.
We begin with Libby being discharged from hospital with her daughter, despite Darla not passing her meconium and having coughed up green bile (classic signs of Hirschsprung's). Thankfully a visiting midwife became her saviour as she was transferred to a specialist hospital (Alder Hey), where her daughter could receive life saving treatment.
Later in the episode Libby explains the need for mothers to be offered support if your child has gone through a condition such as Hirschsprung's, as it is a very traumatic time for both parent and child, especially when it comes to surgery.
Please enjoy the episode!
Follow Libby:-
Instagram - @ldarcie_
TikTok - @ldarcie
With no family of Hirschsprung's, Taylor discusses her journey so far about her son Bowen, who is 7 months old.
Bowen was diagnosed with Hirschsprung's despite passing his meconium at 3 weeks old. Taylor talks through the story from her own point of view as well as sharing handy hints and tips on TikTok.
Later on we talk about how well Bowen is progressing and Taylor's thoughts on the future.
Please enjoy the episode
Follow Taylor:-
Instagram - @taylammonds_
TikTok - @tay_l0r
In this episode we follow on from last week, where we talked about the new Hirschsprung's website, www.hirschsprungsdisease.co.uk and how this all came to be.
Later on Georgina gives us an update on her son Ffredi, as well as some valuable hints and tips that she has learnt so far.
Follow Georgina - @livewithgeorgina
Nearly 7 months after her last appearance, Georgina talks to me about her exciting new project - a UK dedicated Hirschsprung's website!
In the first half of the 2 part special we delve into the stats and current research surrounding Hirschsprung's, especially in the UK as well as interesting studies taking place including HAWAII, BEACH and ALOHA.
Tune in next week for part 2.
Follow Georgina - @livewithgeorgina
Visit the Hirschsprung's UK website:-
www.hirschsprungsdisease.co.uk
