It's a Rare Story

Finding Gratitude with Being Born with a Cleft Lip and Palate | Ep. 07

On this week's episode, Sarah sat down with Darcey. She was born with a Unilateral Cleft Lip and Palate. Darcey is 20 years old and currently entering her third year at the University of Missouri, where she is majoring in biochemistry. Her goal is to attend medical school and become a pediatric plastic surgeon with a focus on craniofacial reconstruction, inspired by her own journey.To learn more about the ELSA Act please visit: https://acpacares.org/advocacy/elsa/To support and to help advocate about the ELSA Act please visit: https://ujoin.co/campaigns/2473/actions/public?action_id=5391To stay up to date on everything she is up to, follow her on Instagram: @darcey_r__wright...Want your story to be featured on It's a Rare Story? Contact us today at itsararestory@gmail.comFollow us on:TikTok: @ItsARareStoryInstagram: @ItsARareStoryYouTube: @ItsaRareStory

Kat's Story with TAR Syndrome - Episode 06

On this week's episode, Sarah sat down with Kat. She was born with Thrombocytopenia-Absent Radius (TAR) Syndrome and shares how navigating life has been.Kat is a campus staff minister with InterVarsity Christian Fellowship at Rider University and Rowan College of South Jersey. She is a mom to a two year old boy and has been married for 5 years to her college sweet heart. She hosts a podcast called No Day is Normal where she shares about her experience with Ableism and accessibility in today's culture.Instagram: @kathlyn.roffinaPodcast Instagram: @nodayisnormal ...Want your story to be featured on It's a Rare Story? Contact us today at itsararestory@gmail.comFollow us on:TikTok: @ItsARareStoryInstagram: @ItsARareStoryYouTube:  @ItsaRareStory  [https://studio.youtube.com/channel/UCGwE_LQTqcAW2U6wJWFIWCg]

Shannon's Story with a Traumatic Brain Injury - Episode 05

On this week’s episode, Sarah sat down with Shannon. She sustained a traumatic brain injury when she was three and shares how life has been since then.Meet Shannon!Shannon is a graduate of Washington Township High School and Rowan College of South Jersey. She is a personal trainer at RiverWinds Community Center and has a certification in NASM, Women's Fitness Specialist and Senior Fitness Specialist. Shannon loves country music, fashion, arts and crafts, true crime, and cats.She has not let the traumatic brain injury stop her from pursuing all the things in life. Her story shines a light on overcoming obstacles.For "Saving Shannon - A Family's Story of Strength and Devotion" by Paul J. Mulhern, Shannon's dad, visit https://www.amazon.com/Saving-Shannon-Fami...Instagram: shanylizmulhern Tiktok: @shanylizmulhern_Facebook: Shannon Mulhern

Jireh's Story with Fabry Disease - Episode 04

On this week’s episode, Sarah sat down with Jireh. Within the past few years, he was diagnosed with Fabry Disease aa rare genetic lysosomal storage disorder, where you don't have enough of a certain enzyme that breaks down fats. These fats collect in blood vessels and tissues, raising the risk of heart attack, stroke and kidney failure.Meet Jireh!I’m living with a rare genetic condition called Fabry disease. Three years ago, my life changed completely when I survived a subarachnoid hemorrhage and a right pontine stroke. These 2 strokes lead to my Fabry Disease diagnosis and a long road of recovery—physically, emotionally, and spiritually.I share my journey of living with a rare disease, managing the complexities of recovery, and how my faith has been the foundation of my strength. From navigating symptoms to finding purpose in the pain, my hope is that my story encourages others facing impossible odds. If you're facing trials—I pray this conversation brings you hope.Be joyful in hope. Patient in affliction. And faithful in prayer.Romans 8:28For all the ways to connect with him:Instagram: www.instagram.com/jireh.recapsYouTube:  @jireh.recaps  [https://studio.youtube.com/channel/UCk3VjwaKacZtle8-fCv5V6Q]

Wesley & M.E.'s Story with Pfeiffer Syndrome - Episode 03

On this week’s episode, Sarah sat down with Wesley & M.E. They’re twins and were born with Pfeiffer Syndrome which is a rare genetic disorder characterized by premature fusion of certain bones in the skull, hands, and feet.  Meet Wesley and M.E.!!! Wesley and M.E. are from South Carolina. They both graduated from the College of Charleston with degrees in Communications and now are Program Coordinators for FACES: The National Craniofacial Association. They’ve been to different Children’s Craniofacial Association (CCA) events. They love traveling and living their best lives!!! Wesley is the Programs Coordinator at FACES and also works with Face Equality International to help the global facial difference community. She loves trying new food and traveling especially to Philadelphia because of all the different types of food. M.E. is the Programs Coordinator at FACES. She enjoys being on the water with family and friends. She loves all things Bravo TV.  She is a Mac and Cheese addict and has created her own instagram page  for all things Mac and Cheese!  For all the ways to connect with them and the organizations they’ve been a part of… Instagram: Wesley: @wksand, M.E.: @Itsnotyouitsm.e Children’s Craniofacial Association:  @ccakids https://ccakids.org/ [https://ccakids.org/]  FACES: The National Craniofacial Association: @facescraniofacialassociation https://www.faces-cranio.org/ [https://www.faces-cranio.org/] Face Equality International: @faceequalityint https://faceequalityinternational.org/ [https://faceequalityinternational.org/#]