Episodes

Erick found out shortly after birth that his daughter Erika has Down syndrome. Erick believes that Erika has made him a better, more patient person and parent. Finding out your daughter has Down syndrome Erick didn’t find out about her diagnosis until after she was born. Erick said, “Maybe five minutes in. I remember the doctor, she actually said “I don’t know but it seems like your daughter might have Down syndrome. I have a feeling from what I’m seeing.” My reaction was “okay, she can be wron...

Daniel and his wife spent 11.5 years of their life devoted to taking care of their son Lucas. Lucas had a very rare condition called Menkes disease. Despite being total care, Lucas brought love, joy and happiness to their family. Menkes syndrome: Daniel’s Story What is Menkes disease? Menkes disease is a disorder that affects copper levels in the body. Menkes disease is characterized by sparse, kinky hair which is known to break easily, failure to thrive, seizures and deterioration of the nervo...

Brittney and Derik share what SHINE syndrome is and how it has made an impact in their life. Their daughter has been a joy in their life despite some of the difficulties that come when having a child with SHINE syndrome. SHINE syndrome: Brittney and Derik’s Story What is SHINE syndrome? SHINE syndrome stands for sleep disturbances, hypotonia, intellectual disabilities, neurological delays, and epilepsy. There are only 150 known cases world wide, making the disability extremely rare. Brittney, ...

When Wendy first found out that she had a son with Down syndrome she was devastated. She felt as if her life was over and didn’t know what life would look like for their future. 32 years later she now realizes how great her life is with her son Matt in it. My life is ruined When Matt was 3 hours old, Wendy recalls her experience, “Yeah well so a lot of emotions, a ton of emotions. I think every emotion known was going through. I experienced um shock, fear, trauma, devastation, anger, what did I ...

During a routine ultrasound, Madison and Ty found there was something was wrong with their baby boy. When they went to the specialist, they were told their baby’s bladder was large, and his kidneys were covered in cysts and had little to no function- a condition that is incompatible with life. Devastated, Madison thought about the possibility of carrying their son as long as she could, so they could donate his organs. They learned to qualify for organ donation, he had to be carried to 36 weeks’...

First signs something was wrong Erika and Steve first noticed something was different with their son Blaise when he was 18 months old. Erika recalled, “He went to daycare and we would go in and notice that all the kids are playing in one area and he’s over to an area by himself. He always did individual play.” That wasn’t the only thing she noticed. She shared that one of the most telling signs that something was wrong was when she dropped Blaise off at daycare. The other children would cry fo...

Kristy and Andrew shared their journey with their daughter Hadley, who has Pfeiffer syndrome. They found out in utero something was wrong and were candid about their worries and stress. When Hadley was born all of that changed. Pfeiffer Syndrome: Hadley Something Was Wrong During her 20 week anatomy scan, Kristy was told there were some things that were abnormal with her baby. At the time, Kristy didn’t think much about it. She recalled, “we didn’t really think anything of it. I should have beca...

Having the only two known cases of a genetic mutation called THAP12, Mariah has used her daughter’s condition for good. She is a fierce advocate by paving the way for future research to help others who may receive the same diagnosis. THAP12: The Only Two in The World Three Month Old Started Turning Blue Mariah has two daughters, Emma and Abby, both of whom were born with a very rare genetic mutation. Mariah recounted, “They were diagnosed with a genetic condition that had not ever been discover...

Agenesis of the Corpus Callosum, Goldenhar Syndrome Knowing Something is Wrong During a routine ultrasound Regan was told that her son, Matthew, had some abnormalities with his brain. Regan shared, “Actually the doctor didn’t know a whole lot. He just said there was a problem with the sonogram, he had to Google it. He didn’t really give us a lot to go on. But he told me what it was.” His diagnosis was agenesis of the corpus callosum. The corpus callosum in a piece of the brain that connects the...

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 Family comes together to receive diagnosis Dani is no stranger to working with children who are delayed. She is an occupational therapist and worked with children in the early intervention program. This a...

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 thought ‘This is what I have.’ I didn’t know any different as a parent.” As a first time mom, Carrie didn’t have anyone to compare Luke to. She said, “I think in a way that was a blessing.” Luke has sever...

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 mom, Wrayanne, noticed something wasn’t quite right with her daughter. She recalls, “I was seeing certain things. She was a little behind with milestones, but I was a first time mom, so you know, I didn’t...

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 Dysplasia, Also known as Respiratory Distress Syndrome Mother has Traumatic Birth with micro-preemie twins When Jess went into preterm labor at 24 weeks, she was admitted into the hospital. While there sh...

In this episode, Dr. Gerald Nebeker dives into the history surrounding the formation of the Special Olympics. He also interviews Rebecca Ralston, who is the director of the Young Athletes Program of The International Special Olympics. The history of Special Olympics The Special Olympics was first started as a result of advocacy work through the Kennedy Foundation. Eunice Kennedy Shriver had a sibling with an intellectual disability. That relationship fostered the creation of a summer camp called...

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 otherwise afford a doll. A Doll Like Me The Formation of A Doll Like Me Despite not having a child of her own with a disability, Amy worked with children with disabilities during her internship for her s...

Candace comes from a big family; 11 children to be exact. The youngest child was born with Down syndrome. Candace shares her special relationship with Angelita and how she has impacted her family and life for good. Sister are Best Friends Finding Out Your Sister has Down Syndrome When Candace’s mother was pregnant with Angelita she knew something was different. Candace recalls her mother saying, “I can’t explain it, I just knew something was a little different.” Even though she had a feeling tha...

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. She used her blog as a platform to tell a family’s story about their child who had spinal muscular atrophy or SMA. Now Go Shout Love is a cause-driven for-profit business that raises awareness and funds f...

Using Personal Experiences to Help Others Southwest Autism Resource and Research Center Denise founded two organizations to help better the lives for people with disabilities. She was inspired by her own son Matt, who is on the autism spectrum. Southwest Autism Resource and Research Center (SARRC) and First Place. She shared what SARRC is, saying, “SARRC was formed with a big vision, ‘To ensure that individuals with autism and their families would be supported throughout their lifetimes, while ...

Katherine has a sister she never knew existed until she was 12 years old. A sister, who is profoundly disabled was placed in an institution as a young child. Katherine reconnected with her and has become her guardian. Surprise When Katherine was 12 years old she was shocked to learn that she has a sister! Her parents were encouraged to put her sister Margaret in an institution. Katherine stated, “the specialist as soon as he saw my sister said to my mom, ‘your child is severely, profoundly retar...

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 Ukraine. International Adoption Facts and figures The US State Department considers international adoption to be one of it’s highest priorities. They said, “..it should be an option for children in need of...

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. Early Intervention According to the CDC, early intervention is a term used to describe services offered to children ages birth to three with developmental disabilities and or developmental delays and thei...

Christie and Eric noticed their daughter wasn’t meeting expected milestones and at 5 months, Elie was diagnosed with infantile spasms which is a seizure disorder, resulting in developmental delays and intellectual disability. Multiple Diagnoses Lead to Love and Acceptance Daughter born with catastrophic seizure disorder Elie was 3 months old when Christie and Eric noticed she was making some odd movements. They mentioned their concerns to their pediatrician who told them that, at 6 months if she...

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 employees. Employment Opportunities for People with Disabilities Unemployment Rates There are 48.9 million people in the US with at least one form of a disability. 65 percent of those are unemployed. With the ...

Jessica and Johnathan were shocked and relieved to receive a diagnosis for their son Trenton. Jessica struggled for years to find a doctor who would help her. Her journey in advocacy led her to start a nonprofit organization called Collaborative Corner for Exceptional Children. A company dedicated to helping parents find resources and become advocates for their children with disabilities. Collaborative Corner for Exceptional Children Hormone Growth Deficiency Both Jessica and Johnathan’s childre...