The Rare and Resilient - ONE in 5000 Podcast

Episode 12 - Interview with Dr Richard Wood, Chief - Center of Colorectal & Pelvic Reconstruction - Nationwide Children's Hospital, Columbus, Ohio, USA

For episode 12, we are very fortunate to be joined by one of the world's leading IA/ARM Pediatric Surgeons, Dr Richard Wood, who is the Chief of the Center of Colorectal & Pelvic Reconstruction (CCPR), Nationwide Children's Hospital, Columbus, Ohio, USA. Richard shares really important research information and discusses a wide spectrum of topics (Dilations; Re-do surgery; MACE (Malone); Cecostomy; PSARP; Permanent Stoma; Laxatives and Wound Care.) I'm sure listeners will find this comprehensive episode of great value and very informative. 

Episode 11 - Interview with Soma - Mother of 2 1/2 year old daughter Kaze from Iraq, who was born with IA/ARM (Cloaca)

For episode 11 we are joined by Soma from Iraq (Kurdistan region), who is the mother of two and half year old Kaze, who was born with IA/ARM (Cloaca). She shares their remarkable journey of how she had to travel to Germany alone with her daughter to get life changing surgery as her husband and eldest daughter were refused visas, and their family were apart for three months. Her story will touch your heart as she details the immense difficulties a family endures in a country where the medical environment and society is very challenging when it comes dealing with a complex medical condition.

Episode 10 - Interview with Chloe - Mother of 14-month-old daughter Raven from Australia, who was born with IA/ARM

For this episode we are joined by Chloe from Queensland, Australia, who is the mother of her beautiful 14-month-old daughter Raven. She shares their IA/ARM journey and discusses how her and her husband Ben committed to a wonderful fundraising initiative called Run4Raven, where they ran 5000 minutes in one month to raise awareness and understanding of IA/ARM in the general community and raise funds to support the ONE in 5000 Foundation.

Episode 9 - Interview with Wes, a 26 year old IA/ARM adult from Colorado, USA

For episode 9, to celebrate "World Continence Week" we are joined by Wes from Colorado USA, who is 26 years old. Wes shares his story about living with bowel incontinence and how this has not held him back from graduating medical school to pursue his dream of becoming a Doctor. His story is one of absolute commitment under adversity with wonderful support from his family.

Episode 8 - Interview with Verlie - Mother of her remarkable 8 year old son Dexter from Australia who was born with IA/ARM.

For episode 8 we are joined by Verlie from Perth, Australia who is the mother of an amazing young man, 8 year old Dexter. She shares their truly remarkable journey of him being born with IA/ARM and getting a Malone/ACE at the age of 3, then having open heart surgery at the age of 4 and being diagnosed with Autism and ADHD at the age of 7. In the last 12 months Dexter has also been diagnosed with Elhers Danlos Syndrome. This episode will take everyone through many emotions, but the overriding feeling will be absolute love and respect for how a family can cope with so much adversity but their unconditional love and commitment has got them through, as well as the incredible resilience of their amazing son Dexter.

Episode 7 - Interview with Sophie, a 25 year old IA/ARM adult from Arizona, USA

For episode 7, we are joined by an IA/ARM adult, Sophie from Arizona, USA who is 25 years old. Sophie shares her story with us and we hear how she has fulfilled her lifelong dream of becoming a Nurse and how that enabled her to travel to Africa to help care and treat young African children. Her story will inspire those who hear it and make a difference to so many young girls who were born with IA/ARM.

Episode 6 - Interview with Aiden (14 years old) who was born with IA/ARM and his parents Dave & Michelle from New Jersey, USA

For episode 6, we are joined by a wonderful family from New Jersey, USA. Aiden (14 years old), who was born with IA/ARM and his parents Dave & Michelle all share their respective personal experiences and their journey as a family.

Episode 5 - Interview with Blake (7 years old) born with IA/ARM and his mother Amanda from Texas, USA

For episode 5 we are joined by Blake (7 years old) from Texas USA, who reads his short story of living with IA/ARM. Also, his twin brother Austin talks about how he supports his brother. Their wonderful mother Amanda, then takes us on an emotional journey detailing their family story and gives us an insight into the battles she has faced dealing with the USA Healthcare system in trying to get Blake's medical needs met.

Episode 4 - Interview with Rebecca - Mother of 2 year old son Jaxson from USA who was born with IA/ARM.

For this episode we are joined by Rebecca from Alaska, USA, who is the mother of two year old Jaxson. She shares their IA/ARM journey and how her family have had to travel interstate to get specialised care and treatment for their son who has had to face many challenges in his short life. 

Episode 3 - Interview with Aimee - Mother of 2 year old daughter Madison from New Zealand, who was born with IA/ARM

For this episode we are joined by Aimee from Invercargill, New Zealand, who is the mother of two year old Madison (Madi). She shares their IA/ARM journey and also discusses the current challenges her family are facing in getting ongoing care for Madi, who makes a very special appearance on the podcast.