The Rare and Resilient - ONE in 5000 Podcast

Episode 48 - Interview with Sharone from New York USA, mother of eight year old David, born with IA/ARM

For episode 48, we are joined by Sharone from New York USA, who is the mother of her eight year old son David, who was born with IA/ARM, as well as VACTERL Association. Sharone shares her unique perspective as being a long term NICU Nurse, then becoming a NICU parent after David was born. We also hear how David has navigated his journey of having constant accidents and then finally finding a bowel regime that has been life changing for him. Also, we discuss how David was diagnosed with a tethered cord at the age of eight which required subsequent surgery.

Episode 47 - Interview with Dr Alessandra Gasior, Pediatric & Adult Colorectal Surgeon at Nationwide Children’s & Ohio State University Medical Centre

For episode 47, we are joined by Dr Alessandra Gasior, the first colorectal surgeon in the world to be fellowship trained in both pediatric and adult colorectal surgery.  Dr Gasior is the medical director of the of Colorectal Transitional Care at Nationwide Children's Hospital as well as a surgeon with the Ohio State University Medical Centre. We discuss the reason why she chose her speciality in colorectal conditions and shares her unique perspective of treating children, adolescent and adult IA/ARM patients, and her passion in transitional care to ensure patients now can transition from pediatric to adult care under the same doctor. We discuss many topics that I know will be of great interest to patients, families and medical professionals. 

Episode 46 - Interview with Melissa from Bristol, England, mother of 3 & 1/2 year old Halle, born with IA/ARM

For episode 46, we are joined by Melissa from Bristol, England, who is the mother of 3 & 1/2 year old daughter Halle who was born with IA/ARM, TOF and associated issues. Melissa shares their journey of dealing with these two major issues at birth which both required urgent surgeries. Halle then had further complications that required more surgery and eventually needing a TPN (which is IV artificial feeding) to allow her body to function. Their story is one of absolute family commitment and inspiration to maintain the health of Halle and give her the best quality of life possible.

Episode 45 - Interview with Lily, 19 year old IA/ARM adult from Washington State, USA

For episode 45, we are joined by Lily from Washington State, USA, who is 19 years old and was born with IA/ARM, as well as associated VACTERL issues. Lily shares her truly remarkable story of being born in China, and then taken to an orphanage and eventually taken in by a foster family at nine months old until the age of five and a half when she was adopted by an American family. We discuss the lack of specialised medical care in China and the ramifications of this when she got to the USA and had to endure many surgeries for her medical issues. Lily is now in college studying to be a pediatric nurse and I'm sure everyone will be inspired by this wonderful young woman's incredible journey and positive outlook on life.

Episode 44 - Interview with Jess from Shropshire, England, mother of 3 year old (almost 4) Felicity, born with IA/ARM

For episode 44, we are joined by Jess from Shropshire, England, who is the mother of 3 year old (almost 4) daughter Felicity who was born with IA/ARM. Jess shares their journey which started with her IA/ARM not being diagnosed for six days after Felicity becoming very ill and required urgent hospitalisation and subsequent surgery. We then discuss the challenges IA/ARM parents must navigate (i.e. Stoma Bag; Dilations; Bowel Management & Potty Training etc.) Jess also details how Felicity at 3 years of age, remarkably administers her own suppositories so she can go to the potty.

Episode 43 - Interview with Taylorann, 22 year old IA/ARM adult from Ohio, USA

For episode 43, we are joined by Taylorann from Ohio, USA, who is 22 years old and was born with IA/ARM, as well as Neurogenic Bladder and associated VACTERL issues. Taylorann shares with us, her extraordinary life story of dealing with the physical and emotional struggles she has endured and being told at an early age that she was "the 1% of the 1%" due to the complicated nature of her health issues and how it impacted her ability to attend school. We also discuss the very important topic of how her health has impacted on her siblings. I'm sure everyone who listens to this podcast will be in awe of this wonderful young lady.

Episode 42 - Interview with Hattie from Peterborough England, mother of nearly 4 year old Willow, born with Anal Stenosis (IA/ARM)

For episode 42, we are joined by Hattie from Peterborough, England, who is the mother of nearly 4 year old daughter Willow who was diagnosed with Anal Stenosis at birth. But after continued issues with her bowels and Hattie pursuing research and further medical opinion, Willow was diagnosed at the age of 3 with the congenital condition, called  “Currarino Syndrome” which is associated with IA/ARM. Willow at the same time was found to have a “Tethered Cord” which required major surgery. 

Episode 41 - Interview with Holly & Matt from Florida USA, parents of 18 mth old Edison, who was born with IA/ARM

For episode 41, we are joined by Holly and Matt from Florida, USA who are the parents of their 18 month old son Edison who was born with IA/ARM as well as a congenital heart condition and associated VACterL issues. Holly takes us through their journey of initial heart diagnosis during her pregnancy, then the shock of the IA/ARM at birth and then having to deal with airway issues and navigating his multiple surgeries. Matt then shares his perspective as a Dad and how his personal medical experiences has enabled him to support Holly and advocate for Edison. 

Episode 40 - Interview with Bristol from Tennessee USA, mother of 2 year old Roman who was born with IA/ARM

For episode 40, we are joined by Bristol from Tennessee, USA who is the mother of two and her youngest son Roman who is two and a half was born with IA/ARM. Bristol shares her journey with Roman and details the delays in his surgeries which has left him still with his Stoma Bag and her questioning whether to go ahead with the surgery or keep his colostomy as things are going really for him at the moment. We also discuss a video she made showing Roman pretending she also had a bag and how it’s been viewed over 1.3 millions times, and his special relationship with his “Ostomy Bear.”

Episode 39 - Interview with Joe, 32 year old IA/ARM adult from Durham County, England

For episode 39, we are joined by Joe (aka @MrMagicToilet on social media) from Durham County, England, who is 32 years old and was born with IA/ARM. Joe has lived his entire life hiding his IA/ARM, until a few months ago when he decided to open up to his friends and the world about his journey living with his congenital condition. He has had a ACE/Malone since five years of age and he talks openly about how it has affected his daily life, as well as sharing with us the physical and mental challenges he has endured. Joe also details how his condition impacts on his relationship with his fiancé and three daughters.