Personal Story Episodes

Creed is missing the majority of his brain. He essentially only has his brain stem and all of his other brain is missing. Doctors deemed her child deemed incompatible with life, but Creed has defied the odds is now 9 years old. What is anticipatory grief? It is the emotions associated with grief before the expected loss actually happens. -- Think of it as "What will never be."

Today, I am excited to introduce our listeners to the absolutely fabulous organization everyone should know about — A Kid Again created to provide kids with life-threatening conditions and their entire family with the opportunity to forget about the stress that comes with having a child with a medical condition.

Sometimes parents of children who have suffered a stroke feel like they don't fit in and we provide an analogy that hopefully will change that mindset. Our guests today are AVM Brain bleed survivors Kyler Lewis and Ashley Lindsey who talk about what it is like to deal with brain vessel disease. We end the podcast going over our last chapter of our focus book, Suffer strong where Jay talks about "The Unknown" and we learn about the importance of hope when suffering and finding bravery to illuminate the darkness and uncover the treasures hidden there.

In Brain News, researchers have recently performed a successful surgery to repair a Vein of Galen Malformation, in a baby’s brain before birth. This month's interview is with Brianna McCulloch who runs the Kailee Mills Foundation-- a charity on a mission to save lives one seat belt click at a time. The podcast ends with a discussion of Chapter 11 of our focus book, Suffer Strong, noting world is missing something valuable if people are not able to recognize and use their talents and gifts. Article Mentioned: https://newsroom.heart.org/news/in-first-in-utero-brain-surgery-doctors-eliminated-symptoms-of-dangerous-condition?fbclid=IwAR3kfAUdMMk4MaBAoUxVSUjXmC6h4lraG6bzUsIeS5bxe5KxD2Sy9TYovdE Guest Website: https://www.kaileemillsfoundation.org/

A Pediatric ischemic stroke is a type of stroke that occurs when a blockage, such as a blood clot, reduces or completely stops blood flow to a part of the brain. This causes brain cells to be damaged or die, which can cause long-term disabilities. Our guest today, Mara Yale was introduced to the world of pediatric stroke when her 2nd child was diagnosed shortly after their birth. She has made it her mission to share information to help parents achieve the best possible outcome for their children. In Chapter 10 of our focus book, Suffer Strong we discuss the need to redefine healing and the truth about our scars. Guest Youtube: https://www.youtube.com/@pediatricstrokeandbraininjury

This podcast starts with a brief explanation of the genetic condition, Hereditary Hemorrhagic Telangiectasia (HHT) and tells the story of Stephany Zumerling who suffered for years without the correct diagnosis. Her medical journey offers lessons we can all learn from and highlights the importance of finding a doctor who takes the time to listen to their patient and investigate symptoms that don't make sense. The podcast ends with lessons learned from Chapter 9 of our current focus book Suffer Strong: written by Katherine and Jay Wolf.

In Brain News we go over two published studies from Stanford University involving Stem Cell treatment for Stroke survivors. Our guest today is Jonathan Slifka who was born with spina bifida who discusses the importance of working together to make positive changes in what you want to see happen in life. We end with a discussion on redefining failure in Ch. 6 of our focus book, Suffer Strong, where Jay points out how great people are at projecting an image to the public that is often completely different from how they actually feel.

In Brain News: Survivor, Malori Rodgers, just released her book “A Stroke a Heaven” which talks about her personal journey after a traumatic brain injury. Our guest today is Heather Golladay, who talks about the importance for looking at the bright side of things. Her husband suffered an ischemic stroke and she is the graphic arts designer for AVM Alliance and the creator of our butterfly pig and each week's art work. We end today with Chapter 5 of our focus book Suffer Strong with a discussion on redefining loss and opening our hands to the future.

This week, the short film Time Bomb was released to showcase the real life challenges of a rare disease diagnosis and was created with the help of The Aneurysm and AVM Foundation. With the holiday’s approaching, decadent treats and delicious food on the horizon it is no wonder heath and weight loss become added priorities on many a new year resolution list. How to put in place something that sticks and works can be very elusive. Sometimes when parents are in survival mode, health and fitness is at the bottom of all lists— even new years resolutions. To help with a few tricks to get us started for the holidays and new year, I have health & fitness coach Elizabeth visiting with us today. And in Chapter 4 of our focus book, Suffer Strong we discuss the philosophy Japanese Kintsugi pottery.

Today we are going to be talking about the UCSF Pediatric Stroke Research Center and three of their current research projects headed by Dr. Heather Fullerton. We will visit with guest Jennifer Odell whose beautiful son Brayden gained his wings just days after his AVM rupture and learn what is important to families during this difficult time. We will end with a short discussion on part one of Chapter 2 of our current focus book “Suffer Strong” by Katherine and Jay Wolf focusing on the importance of redefining the past to allow peace and eventually healing on the inside.

Today we are going to be talking about something many parents consider for their child who has a disability: service animals! We are going to go over the general ADA rules as well as the steps to take and things to consider when deciding if a service animal is the right addition for your family. Our guests are Terry and Nancy Cadel who own River’s Edge Dog Academy—a business who has been training service animals for over 35 years, and we will end with a short discussion on the first half of chapter 1 of our current focus book “Suffer Strong: How to Survive Anything by Redefining Everything by Katherine and Jay Wolf. Thank you for joining us.

Today we are going to get caught up on some Awareness Month information and statistics. Our guest on the show is Amy Danner, who is the mother of an AVM Survivor and Epilepsy warrior. We are going to end with a short discussion on the prologue and chapter 1 of our current focus book “Suffer Strong: How to Survive Anything by Redefining Everything" by Katherine and Jay Wolf.