The Rare and Resilient - ONE in 5000 Podcast

Episode 51 - Interview with Sinead from Dublin, Ireland, mother of 11 year old Matthew born with IA/ARM

Fri, 16 Aug 2024 19:23:26 +1000

For episode 51, we are joined by Sinead from Dublin, Ireland, who is the mother of her 11 year old son Matthew, who was born with IA/ARM. Sinead shares the journey that they have been on and hear about the experiences of dealing with IA/ARM and the immense challenges they faced at times. We also hear how a visit to hospital when Matthew was ready to start school was life changing due to the care and support from a Nurse. I know this episode will provide an incredible insight into the impact IA/ARM has on lives, but most of all show that no matter the challenges, you can get through it with a parents love and a child's incredible resilience.

Episode 50 - Interview with medical professionals on Pelvic Floor Physical Therapy (PFPT) for IA/ARM patients (children & adults)

Fri, 22 Dec 2023 14:57:08 +1100

For episode 50, we are joined by medical professionals, Dr Alessandra Gasior, Sarah Driesbach, Erin Gates from Nationwide Children's "Center for Colorectal and Pelvic Reconstruction Service" (CCPR) & Laura Ward from Ohio State University University Wexner Medical Center (OSU) to discuss "Pelvic Floor Physical Therapy" (PFPT) for IA/ARM patients (children and adults.) We discuss questions raised by parents of children and adults living with IA/ARM which cover all aspects of PFPT which I know listeners will find very informative and be of great interest in the positive outcomes.

Episode 49 - Interview with Monica from New Jersey USA, mother of 18 mth old Jordon, born with IA/ARM

Tue, 24 Oct 2023 13:35:37 +1100

For episode 49, we are joined by Monica from New Jersey USA, who is a mother of four, with her youngest son, 18 month old Jordan, who was born with IA/ARM, as well associated issues. Monica shares the emotional journey she has been on with Jordan since he was born which has required multiple surgeries which included a distressing issue where she followed her motherly instincts when Jordan was unwell which resulted in Jordan having emergency life-saving surgery.

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

Sat, 06 May 2023 08:59:02 +1000

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

Sat, 29 Apr 2023 09:28:14 +1000

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

Fri, 03 Mar 2023 09:30:57 +1100

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

Mon, 20 Feb 2023 19:58:53 +1100

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

Mon, 06 Feb 2023 19:42:34 +1100

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

Fri, 03 Feb 2023 07:15:11 +1100

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)

Thu, 19 Jan 2023 19:19:12 +1100

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

Fri, 13 Jan 2023 21:14:33 +1100

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

Sat, 07 Jan 2023 12:13:51 +1100

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

Mon, 05 Dec 2022 10:29:14 +1100

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.

Episode 38 - Interview with Kari from South Carolina USA, mother of 14 month old Luca who was born with IA/ARM

Wed, 09 Nov 2022 14:51:03 +1100

For episode 38, we are joined by Kari from South Carolina, USA who is a mother of two children with her 14 month old son Luca born with IA/ARM as well as associated VACTERL conditions. Kari shares with us the incredible challenges Luca faced in his initial months after his birth and the subsequent investigation finding he had a major issue due to his initial colostomy surgery, which then required revision surgery. Kari then made the decision to seek specialised care for Luca which led her to transfer his care to a dedicated multidisciplinary Colorectal centre, which has resulted in a much improved quality of life for Luca.

Episode 37 - Interview with Naomi from Yorkshire UK, mother of 3 year old Ralph who was born with IA/ARM

Wed, 12 Oct 2022 11:24:43 +1100

For episode 37, we are joined by Naomi from Yorkshire, UK who is the mother of four and her youngest son Ralph who has just turned three years old was born with IA/ARM. Naomi is a theatre nurse, and also has experience as a stoma care nurse, but she details how nothing could prepare her for the experiences of navigating the journey of dealing with the complexities of having her own child born with a medical condition. She also talks openly on why she feels like she has to justify why Ralph is still in nappies (diapers) which I know will resonate with so many parents in our community.

Episode 36 - Interview with Nat from Melbourne, Australia, mother of 18 month old Levi who was born with IA/ARM

Wed, 21 Sep 2022 13:56:47 +1000

For episode 36 we are joined by Nat from Melbourne, Australia, who is the mother of 18 month old Levi. She shares their journey of him being born with IA/ARM during COVID-19. Levi had his PSARP at only two months and his reversal at four months due to the uncertainty caused by Covid. Nat details how her family and medical team navigated their way through an incredibly difficult time with no access to family support due to lockdowns.

Episode 35 - Interview with Dr Carlos Reck-Borneo, Pediatric Colorectal Surgeon from Landesklinikum Mödling, Lower Austria

Sat, 02 Jul 2022 12:21:36 +1000

For episode 35, we are joined by Dr Carlos Reck-Borneo, Chief of Pediatric Surgery, Landesklinikum Mödling Hospital, Lower Austria. He is highly regarded as one of the worlds leading paediatric colorectal surgeons specialising in congenital colorectal conditions and has a remarkable story. He began his career in his home country of Ecuador, before moving to Austria and then spent time in USA working with Dr Marc Levitt before returning to Austria and establishing a dedicated colorectal center at his current hospital. Carlos also has been instrumental in humanitarian work treating children in Honduras and Peru. Also Carlos discusses a revolutionary project in the works regarding utilising an "APP" for patients and families for Bowel Management programs.

Episode 34 - Interview with Noah (14 years old) who was born with IA/ARM and his mother Amy from Ohio, USA

Mon, 06 Jun 2022 11:29:14 +1000

For episode 34, we are joined by Noah, who is 14 years old and was born with IA/ARM and his mother Amy as they both talk openly about Noah’s and their family’s journey. Noah is such a charismatic and confident boy who shares how he has coped with the challenges he has faced with his health and how he went from wanting to keep his condition private to now being public about it. Amy also provides a great insight into how they had to navigate their way through the medical system when Noah was younger which finally found them at a dedicated colorectal center and where Noah had life-changing re-do surgeries and started on a bowel management program that has changed Noah’s quality of life in such a positive way.

Episode 33 - Interview with Lori, an IA/ARM mother and Executive Director of Pull-Thru Network

Sun, 22 May 2022 16:55:59 +1000

For episode 33, we are joined by Lori, a mother of a IA/ARM adult daughter who shares her experiences of navigating her families journey from a pre-internet time where the information was extremely limited. They sought out the best medical treatment and care available which led Lori to becoming an active member of the Pull-Thru Network and subsequent role as the Executive Director who she has held for many years. Lori is able to provide a very unique perspective, as she details the many experiences with pediatric care and the transition to adult patient care, and dealing with so many families and medical professionals in the IA/ARM community.

Episode 32 - Interview with Maddie, 25 years old who was born with IA/ARM (Cloaca) from USA

Sat, 30 Apr 2022 09:52:48 +1000

For episode 32, we are joined by Maddie from USA who is 25 years old. Maddie was born with IA/ARM (Cloaca), as well as many associated issues. Her story is a remarkable one, as she details how she has talked openly about her health issues all her life. When she was just a toddler she decided she wanted to be a Doctor and is now fulfilling that dream and is attending medical school. Maddie shares with us the incredible challenges she has faced with her health over the last few years, but it has not stopped her. Her story is one that will give hope to so many young girls born with Cloaca, and also inspire everyone who listens to it, she is an extraordinary young woman with an amazing family.

Episode 31 - Interview with Dr Alberto Pena - Pioneer of PSARP surgery

Tue, 26 Apr 2022 08:41:03 +1000

For episode 31, we are honoured to be joined by Dr Alberto Pena, from the International Center for Colorectal and Urological Care, Children's Hospital Colorado, USA. Dr Pena is an iconic figure in the field of Pediatric Colorectal surgery and is the pioneer of the groundbreaking PSARP surgery, first performed in 1980 which revolutionised treatment of IA/ARM patients. We talk about his remarkable life's journey as a surgeon and how he started his career in Mexico and due to the illness of his son with a severe congenital condition which led him to the USA and his passion in pediatric surgery began. Dr Pena is a truly remarkable person and I encourage all to take the time to listen to this podcast where you will understand how special he is and the love and care he has for his patients and families as well as teaching other doctors all over the world.

Episode 30 - Interview with Christina from Washington State USA, mother of 3 year old Eliza who was born with IA/ARM

Mon, 18 Apr 2022 08:38:04 +1000

For episode 30 we are joined by Christina from Washington State, USA, who is the mother of 3 year old Eliza. She shares their journey from the initial time her IA/ARM was not diagnosed at birth, through all the surgeries and emotions she endured as a parent, as well as finding the right bowel management regime for Eliza. Most importantly, she shares with us how extremely proud she is of her brave and beautiful daughter and how nothing she endured has stopped her from smiling and being a very active child.

Episode 29 - Interview with Dr Andrea Bischoff, Director of International Center for Colorectal & Urological Care - Children’s Hospital Colorado, USA

Sat, 12 Mar 2022 12:17:09 +1100

For episode 29, we are joined by Dr Andrea Bischoff, Director of the International Center for Colorectal and Urological Care, Children's Hospital Colorado, USA. We discuss the start of her career in Brazil and choosing to specialise in pediatric surgery which which led her to Cincinnati Children's Hospital USA in 2007, where she met Dr Alberto Pena and started her passion to care for children with colorectal conditions. in 2016, Dr Pena and Dr Bischoff moved to Colorado and established the multidisciplinary centre. We also discuss many topics of interest including Prenatal diagnosis; Initial treatment; Bowel Management Week; Colonic Manometry; Contrast Enemas; Constipation and Diarrhoea in IA/ARM kids; Skincare; Malone Procedure; Castile Soap & Glycerin and also provides information of their team and the services they provide.

Episode 28 - Interview with Daria from Spain, Mother of 5 year old Daniel born with IA/ARM & Tracheo-Esophageal fistula,

Fri, 04 Mar 2022 14:37:37 +1100

For episode 28, we are joined by Daria from Barcelona, Spain, who is the mother of 5 year old Daniel. She shares their journey of him being born with IA/ARM, Tracheo-Esophageal Fistula and Tethered Cord. Daniel was born in the Prague, Czech Republic and three years ago Daria and her family made the massive decision to move overseas to Spain to ensure Daniel was given the best opportunities for his medical and educational needs. Daria also shares her passion for raising awareness through her artwork and how Daniel got up in front of his school class and explained his conditions, which is so brave and amazing at his tender age.

Episode 27, Interview with Emma, a 47 year old IA/ARM Adult from Queensland, Australia

Sat, 26 Feb 2022 11:41:53 +1100

For episode 27, we are joined by Emma from Queensland, Australia, who is 47 years old. Emma was born with IA/ARM and also was has six conditions relating to VACTERL Association (not L). Her story is truly extraordinary as she shares her journey of dealing with the immense health challenges she has encountered throughout her life, but nothing has stopped Emma. She graduated University and became a Radiographer, travelled the world, got married and is a mother to a 12 year old daughter. In 2020, Emma was diagnosed with cancer (Multiple Myeloma), and we discuss how this has impacted on her life. Emma is truly a remarkable woman and I'm sure you will be inspired and touched by her story and her immensley positive attitude to life.

Episode 26 - Interview with Angel, Mother of 5 year old son Wolf from Australia who was born withIA/ARM

Mon, 21 Feb 2022 17:46:28 +1100

For episode 26 we are joined by Angel from Queensland Australia, who is the mother of 5 year old Wolf. She shares their journey of him being born with IA/ARM and having to have life saving colorectal and heart surgery in the first week of his life. Wolf got his MACE/Malone at an early age and Angel details their daily routine which has enabled him to adapt to school as well as his love for participating in sport, where he recently won medals in Jujitsu. We also discuss how proud Angel is of her Indigenous heritage and how she pays respect to her culture by now creating her own incredible Aboriginal artwork.

Episode 25 - Interview with Carlo, a 37 year old IA/ARM Adult from New York, USA

Fri, 11 Feb 2022 20:54:55 +1100

For episode 25, we are joined by Carlo from New York, USA, who is 37 years old and was born with IA/ARM. Carlo shares his journey of how he navigated his school years and the difficulties he endured. But he has never let his birth defect define him and he has such a positive mindset and acceptance of his condition. It has not prevented him from doing anything in his life, including working all his adult life and getting married in 2021. Carlo's story is one which will inspire parents in our community who are unsure of what the future may hold for their IA/ARM child.

Episode 24 - Interview with Billie - Mother of 14 month old Jimmy from England who was born with IA/ARM

Wed, 02 Feb 2022 12:25:10 +1100

For episode 24, we are joined by Billie from England, who is the mother of 14 month old year Jimmy, who was born with IA/ARM and also hypospadias, which is a recognised associated issue in some IA/ARM boys. Billie details how they were first told that their unborn baby was a girl, then advised he was a boy by a different Sonographer within a month. Then at birth the doctor told them that they needed to do further examination as they were unsure of the gender, and once recognised as a boy, they were then told of his IA/ARM diagnosis. Billie shares their journey with Jimmy who makes some "guest appearances" in a very emotional interview, which I know will resonate with so many families.

Episode 23 (Part 2) Interview with Dr Christina Low Kapalu, Pediatric Psychologist, Children’s Mercy Hospital Kansas City, USA.

Wed, 29 Dec 2021 14:29:48 +1100

As a follow-up to the Episode 23 (Part 1) discussion with Pediatric Psychologist Dr Christina Low-Kapalu from Children's Mercy Hospital, Dr Low-Kapalu shares some insight into suicidal ideation in teens and children in this short recording. As medical trauma causes deeply sad feelings, in rare instances, trauma can even lead to thoughts of suicide, and it’s very important to notice the warning signs. Please note that due to the topic, this clip contains sensitive material.

Episode 23 (Part 1) - Interview with Dr Christina Low Kapalu - Pediatric Psychologist - Children‘s Mercy Hospital, Kansas City, USA

Sun, 19 Dec 2021 19:13:07 +1100

For episode 23 (Part 1) we are joined by Dr Christina Low Kapalu, Pediatric Psychologist, Comprehensive Colorectal Centre, Children's Mercy Hospital Kansas City, USA. We asked families in our IA/ARM community to pose questions and issues that they wish to be addressed on issues regarding the mental health and behavioural aspects of a child/adolescent born with IA/ARM, as well as the impacts on parents and siblings. Dr Low Kapalu answers all the questions raised and also shares her vast experience in dealing with IA/ARM patients and families and the strategies she helps to improve quality of life. This podcast will be of great benefit IA/ARM parents, families and also importantly to educators of a IA/ARM child/adolescent.

Episode 22 - Interview with Denise - Mother of 19 year old son Wilson from USA who was born with IA/ARM

Tue, 30 Nov 2021 12:48:16 +1100

For episode 22, we are joined by Denise from Indiana USA, as she shares the extraordinary story of her son Wilson, who is now 19 years old and was born with IA/ARM in the Dominican Republic. Wilson's story is one that shows how cruel our world can be, but also, how incredibly kind it can be when a family opens their home and consequently adopt child and provides immense love and care. We also hear of the impact beautiful dog named Amara had on Wilson's life and became his best friend and has provided great comfort. This story, as difficult as it is to hear at times will ultimately show that the human spirit can succeed against intolerable odds at times and the absolute humanitarian nature of an incredible family.

Episode 21 - Interview with Suzie - Mother of 10 year old son Kaden from USA who was born with IA/ARM.

Tue, 09 Nov 2021 14:48:09 +1100

For episode 21 we are joined by Suzie from Kansas, USA who is the mother of 10 year old Kaden. She shares their journey of him being born with IA/ARM and how the family made the decision to travel interstate to Cincinnati Children's Colorectal Centre to have the PSARP surgery. She also details how having the Malone/ACE surgery has improved Kaden's life significantly, as well as the wonderful support they receive from his school and the importance of a mental health professional to assist with coping strategies.

Episode 20 - Interview with Cassandra - Mother of 22 mth old son Malachi from USA, who was born with IA/ARM and Down Syndrome

Sun, 24 Oct 2021 18:55:29 +1100

For Episode 20, to celebrate Down Syndrome Awareness month we are joined by Cassandra from Florida USA who shares the story of her beautiful son 22 month old Malachi who was born with "Imperforate Anus/Anorectal Malformation without fistula" and Down Syndrome (Trisomy 21). The classification of "IA/ARM without fistula" is a unique characteristic which is found in only 5% of Anorectal Malformations cases with 95% of children also diagnosed with Down Syndrome. Cassandra gives us an incredible insight into the continual challenges Malachi has endured and the passion she has for advocating for a very special community. I know Malachi's story will touch the hearts of us all.

Episode 19 - Interview with Dr Marc Levitt, Chief of Colorectal & Pelvic Reconstruction, Children‘s National Hospital, Washington DC USA

Mon, 11 Oct 2021 13:51:22 +1100

For episode 19, we are joined by Dr Marc Levitt MD, Chief of Colorectal & Pelvic Reconstruction, Children's National Hospital, Washington DC USA who is internationally recognised as specialising in Anorectal Malformation patients. We chat about how he became a pediatric colorectal surgeon and his passion for training surgeons around the world and his advocacy for a need for a multidisciplinary approach to care for IA/ARM patients. We also discuss a wide variety of topics which will be of great interest to families and patients (e.g. Initial diagnosis, Bowel management, Laxatives/Enemas, Malone/ACE, PSARP, Stoma's, Dilations, Redo surgery, potty training & transitional care).

Episode 18 - Interview with Assoc. Prof. Rebecca Rentea - Pediatric Colorectal Surgeon - Children‘s Mercy Hospital Kansas City USA

Mon, 27 Sep 2021 17:10:04 +1000

For episode 18, we are joined Assoc. Prof. Rebecca Rentea, Colorectal Pediatric Surgeon and Director, Comprehensive Colorectal Centre, Children's Mercy Hospital Kansas City USA. We discuss a very important study conducted by specialists at the "Comprehensive Colorectal Center" as they explored the psychosocial, emotional & behavioral factors which affect the quality of life for IA/ARM & HD patients from age 0-21 under the four categories of Infancy (neonatal), Children, Adolescents and Young adults. The study can be found under the name of "Psychosocial factors affecting quality of life in patients with Anorectal Malformation and Hirschsprung Disease - a systematic qualitative review." Published 20th May 2021.

Episode 17 - Interview with Dr Bruno Martinez, Pediatric Colorectal Surgeon - Moctezuma Children‘s Hospital, Mexico City, Mexico

Sun, 12 Sep 2021 18:58:48 +1000

For episode 17, we are joined Dr Bruno Martinez, Pediatric Colorectal Surgeon from Moctezuma Children's Hospital, Mexico City, Mexico. He discusses how his patients are from the poorest parts of Mexico City, who face great challenges with no social security benefits or insurance cover. Dr Martinez was also on the Organising Committee of the "Global PaedSurg" cohort study called "Mortality from gastrointestinal congenital anomalies at 264 hospitals in 74 low, middle and high income countries: a multicentre, international, prospective cohort study" which was published on "The Lancet" Volume 398, Issue 10297, P325-339, July 24, 2021. Dr Martinez discusses the key findings from the study which will be of enormous benefits to conditions such as IA/ARM, which was included as one of the anomalies studied.

Episode 16 - Interview with Jack from Canada, 11 years old born with IA/ARM and his mother Mary

Thu, 02 Sep 2021 13:54:47 +1000

For episode 16, we are joined by 11 year old Jack and his mother Mary from Canada. Jack is such an extraordinary boy who was born with IA/ARM and associated VACTERL issues and decided he wanted to share his story in the book. He is mature beyond his years as he shares his story and his mother Mary gives us an insight in to the many challenges they have faced together from his early years to the adjusting to school and wonderful supports they have in place. With kids like Jack as role models for other IA/ARM kids, our community is very fortunate.

Episode 15 - Interview with Katrina, 63 years old from England who was born with IA/ARM (Cloaca).

Fri, 20 Aug 2021 15:14:11 +1000

For episode 15, we are joined by an IA/ARM (Cloaca) adult, Katrina from England, who is 63 years old. Katrina takes us on a very emotional journey as she shares her story of living with her congenital anomalies (Cloaca, T.O.F, Bicornuate Uterus & Extra Thumb) and how they have shaped her life through childhood, adolescence and adulthood with honesty and openness. Katrina also discusses how her lived experiences impacted her career as a Nurse and how she provided care to her parents. We are very fortunate to be able to share the story of an incredibly remarkable and resilient lady.

Episode 14 - Interview with Mark, father of a 3 1/2 year son from USA born with IA/ARM, Neurogenic Bladder & Single Kidney.

Mon, 16 Aug 2021 15:42:46 +1000

For episode 14 we are joined Mark from USA, who is the Dad of a 3 1/2 year old son who was born with IA/ARM, Neurogenic Bladder, Single Kidney and also diagnosed with a Tethered Cord at five months of age. Mark shares his personal experience from a fathers perspective, and details the journey he and his wife Holly have been on to get the specialised care for their son and details the challenges they have faced getting the right care for their son with complex medical issues.

----more----

Episode 13 - Interview with Laura & Ryan, parents of 9 year old Peyton from USA who was born with IA/ARM (Cloaca)

Fri, 06 Aug 2021 17:53:27 +1000

For episode 13 we are joined by Ryan & Laura from USA, who are the parents of 9 year old Peyton, who was born with IA/ARM (Cloaca). They share their journey of how Laura and Peyton have had to travel interstate many times to get expert medical care due to the complexity of her condition and detail the impacts these trips had on their other children. Ryan shares his perspective as a father of a daughter with medical challenges as well as balancing the needs of their three sons. Laura, who is an admin of the USA IA/ARM group and has been such a wonderful support to so many families in our community shares her passion in assisting others who are on the same journey and let them know they are not alone.

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

Sun, 25 Jul 2021 20:29:41 +1000

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)

Sat, 03 Jul 2021 10:23:02 +1000

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

Sat, 26 Jun 2021 12:07:40 +1000

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

Mon, 21 Jun 2021 17:16:40 +1000

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.

Sat, 19 Jun 2021 20:17:22 +1000

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

Wed, 16 Jun 2021 20:51:59 +1000

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

Fri, 11 Jun 2021 19:37:01 +1000

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

Sat, 05 Jun 2021 18:37:16 +1000

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.

Wed, 02 Jun 2021 14:18:51 +1000

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

Sun, 30 May 2021 15:21:05 +1000

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.

Episode 2 - Interview with Chantelle - Mother of 2 year old Bailey who was born with IA/ARM

Sun, 23 May 2021 09:14:36 +1000

For this episode we are joined by Chantelle from Tasmania, Australia as she shares her emotional journey with her beautiful two year old son Bailey, who was born with IA/ARM and associated issues, known as VACTERL.

Episode 1 (Introduction) Welcome to the Rare and Resilient: ONE in 5000 Podcast Series

Sat, 15 May 2021 18:26:28 +1000

Greg Ryan welcomes listeners to the Rare and Resilient: ONE in 5000 Podcast Series. In this introductory episode, he outlines his plans for future episodes with members of the global IA/ARM community.