Episodes
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Danielle: DDX3X syndrome
Dani and her family fought hard to receive an official diagnosis for her daughter Hayden. After many specialists they finally received a diagnosis of DDX3X. So rare that there that at that time there were less than 500 people that have ever been diagnosed with this genetic deletion. Dani: DDX3X...
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Carrie: Gervais syndrome, Cerebral Palsy, Autism, and SCN1A Gene Mutation
Carrie was only 22 years old when she received the unexpected news that her son, Luke, was born with several disabilities. She lived far away from family, and single was single. Carrie Finding out your child is different Reflecting back, Carrie said, “So even from the beginning I honestly just...
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Wrayanne: Lennox-Gastaut syndrome
Wrayanne was a first time mom when she learned her daughter, Morgan, was born with a rare severe epileptic seizure disorder. Wrayanne was candid about her struggles and her hopes for Morgan’s future. Lennox-Gastaut syndrome Something is wrong It wasn’t until Morgan was a few months old that her...
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Jess: Bronchopulmonary Dysplasia
Lily was born at 24 weeks gestation weighing only one pound. Lily is a twin and unfortunately, her sister was stillborn. Lily has Bronchopulmonary Dysplasia. Her mom, Jess talks about the grief of losing a child while dealing with the news her daughter had a disability. Jess: Bronchopulmonary...
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Sock Talk: A Doll Like Me with Amy Jandrisevits
Amy Jandrisevits created A Doll Like Me, so kids with physical differences could love and cherish their very own doll that looked exactly like them. She personally makes each doll by hand, and to date she has raised more than $225,000 to help off set the financial burden for those who could not...
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Sock Talk: Go Shout Love
In this episode, Gerald talks with Josh Veach, the co-director for Go Shout Love. A cause-driven for-profit business that raises funds and awareness for families on unique medical journeys. Go Shout Love The Formation of Go Shout Love Go Should Love was first created by Kristen Estock in 2014.…
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Sock Talk: International Adoption for Children with Disabilities
Dr. Gerald Nebeker talks about a few adoption agencies that help facilitate international adoptions for children with disabilities. In this podcast you will also hear from Michelle, the CEO of Reece’s Rainbow as well as Kecia and Chris who have adopted two children with Down syndrome from the...
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Sock Talk- Early Intervention with Kristin Mancuso, PT, DPT
Dr. Gerald Nebeker talks about early intervention services that are available to children with developmental delays and disabilities. Gerald speaks with Kristin who is the director of the Early Intervention program at RISE. She explains who is eligible and the purpose behind early intervention....
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Sock Talk- Employment and People With Disabilities
Even though the country has a record low employment rate of 2-3 percent, people with disabilities have an unemployment rate of 65 percent. Why is this? In this Podcast Gerald talks about with proper training, coaching, and job matching, people with disabilities are able to become dedicated...
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Sock Talk- NIPT
In this episode Dr. Gerald Nebeker talks about NIPT prenatal testing and how the results are often misinterpreted. NIPT Testing What is NIPT? NIPT stands for noninvasive prenatal testing. Doctors often use NIPT to screen for genetic abnormalities. It is considered non-invasive because the test...
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Janalen and Rocky: Prader-Willis Syndrome, Cystic Fibrosis, Adoption, and Down Syndrome
Janalen and Rocky were shocked to learn their first child was born with cystic fibrosis. Little did they know, their life with children who have disabilities was about to unfold. Their second child was also diagnosed with cystic fibrosis. They eventually adopted five children, one of which is a...
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Stacy and Terry: Cri Du Chat syndrome
Stacy and Terry are the parents of twin girls, Sydney and Logan, both have cru di chat. Shocked about the diagnosis, Stacy and Terry were honest about their greiving process and how they accepted their diagnosis. They love their daughters and wouldn’t have them any other way! Turning Grief to Joy...
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Resource: Disability Parenting When Your Partner Is Abusive
For this Good In Our Community feature, we’re featuring Betrayal Trauma Recovery. This is a great resource for anyone that is parenting a child with disabilities and has a parter who is abusive. Here is a blog written by their founder, Anne Blythe: We all know women raising children with special...
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Nikki and Sean: OI- Brittle Bones
Nikki and Sean went in for a routine 20-week ultrasound when it was noticed that their baby’s legs were shorter than expected. They were referred to a specialist who, at 28 weeks’ gestation, suspected osteogenesis imperfecta, also known as Brittle Bone syndrome. Osteogenesis Imperfecta Diagnosis...
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Natalie: Rett Syndrome and Facial Differences
Natalie found out during an ultrasound that her daughter would be born with multiple disabilities. She was shocked and only had 4 weeks to prepare for the birth. She has since become a fierce advocate for Sophia and is proving that a disability is nothing to be ashamed of. Don’t Mess with This...
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Jori and Dan: Autosomal Recessive Centronuclear Myopathy
Jori and Dan have a very unique son named Luxton. He is one of three cases in the world that has autosomal recessive centronuclear myopathy type 5. Luxton however is the only one in the world that has two mutated genes. Autosomal Recessive Centronuclear Myopathy Type 5: The Only One Something Was...
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Laurel and Jaron: 18 P Deletion
Laurel and Jaron didn’t receive a diagnosis for their son, Shane, until he was 4 years old. Shane is diagnosed with 18 P Deletion. 18p Deletion He Started Missing Milestones “We assumed he was like any other kid until he started missing some mile markers. We started seeking early intervention, we...
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Morgan and Rikki: NONO Gene Deletion
Morgan and Rikki have a beautiful boy named Landon, he is 1 of 10 people in the world who share the same condition as him. He is proving doctors wrong and is the sweetest addition to their family. Living Day to Day with a Rare Disability Nothing was Wrong at First When Landon was born, his…
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Kassy and Darren: 7 Q Chromosome Deletion
Kenai is truly one of a kind. With only a handful of people in the world diagnosed with 7Q deletion, he is paving the way and proving doctors wrong. His parents, Kassy and Darren, share what a joy he’s been to their family and how they are helping him grow and learn. Differently-Abled Uncertainty...
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Caitlin and Dallin: Spinal Muscular Atrophy
Auni had spinal muscular atrophy or SMA. A rare fatal disease that is characterized by progressive loss of muscle. While she only lived for 21 months, her parents remember the joy and happiness she brought to their lives and their community. The Fog Will Lift Worst Case Scenario for Parents Comes...
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Cora and Trey: Rett Syndrome
Cora and Trey have identical twin girls. When they were two-years-old, they were both diagnosed with a rare neurological disorder called Rett syndrome. With only eight confirmed cases in the United States, Cora and Trey have become advocates for their daughters. The Only Ones Something Was Wrong...
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Genie: ADNP Syndrome
For years Genie and her husband were told their son, Roland, had Norman syndrome. To their surprise, Roland has ADNP syndrome. A rare neuro-developmental disorder that affects several different systems of the body. Starfish day In utero testing reveals nothing During her pregnancy, Genie had...
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Katie and Eric: Congenital Nephrotic Syndrome
After a trip to the emergency room, Katie and Eric found out their 8-week old daughter, Emerson, had congenital nephrotic syndrome. This condition typically leads to irreversible kidney failure. Don’t be Scared Even When it’s Hard Trip to the ER Brings Terrifying Diagnosis Emerson was about 8…
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Celeste: Fragile X Syndrome
When Celeste was pregnant she found out her son Tyson, was going to be born with Fragile X syndrome. Celeste says the hardest parts are being able to maintain a normal life and learning how to adapt to his needs. But, the challenges are nothing compared to the joys; he is caring, loving, and...
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Karen: Down Syndrome
Karen and her husband were surprised to learn that their son, Caleb, was born with Down syndrome. Even more surprising, Caleb had two heart defects, something sonograms hadn’t picked up on. Karen has since become an advocate for people with disabilities and is grateful she has Caleb in her life....
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Tamara and Matthew: Currently Pregnant with a Fetal Diagnosis of Down syndrome
Tamara and Matthew received an unexpected test result when trying to determine the gender of their baby early in their pregnancy. Their son has a 93% chance of having Down syndrome. In their interview, they speak of their fears and struggles on coming to terms with the results Unexpected News...
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Terah and Brian: Down Syndrome
After unsuccessfully trying for five years to get pregnant, Terah and Brian turned to in vitro fertilization. During their second round, they found out Terah was pregnant. An hour after Indy was born, she was diagnosed with Down syndrome. They were devastated. They shared how they came to terms...
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Shirlene: Down Syndrome
Jim is 51 years old and has Down syndrome. He lives with his mom Shirlene who at the time of his diagnosis had never met anyone with Down syndrome. At first, she was devastated. She now knows how grateful she is that Jim came into her life. Loving Your Child With Down Syndrome Finding out a few...
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Christine: Autism
Christine knew there was something different about her oldest daughter Skylynn. They first hoped she had a sensory processing disorder. However, at the age of two Skylynn was diagnosed with autism. Christine has spent every day since her diagnosis advocating for her daughter and others like her....
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Podcast by Orange Socks
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