Episodes

March 6, 2017

Beth and Bryce: Angelman Syndrome

It took almost three years to get an official diagnosis for their son, Smith. Beth and Bryce shared their journey to getting a diagnosis of Angelman syndrome and how it has impacted their family. Making Your Heart Grow Long Journey Towards a Diagnosis Unlike several disorders that are noticeable at birth, Beth and Bryce thought their son, Smith, was typical. Beth recalled that she noticed he wasn’t looking at her. She said, “At around four to six weeks, he still wasn’t looking at me. We thought ...
March 5, 2017

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. Autism Hero Discovering Your Child has Autism Christine was constantly told “You are a first time mom”, “She’s not behind”, “You don’t know what you are talking about” However, Christine knew there was s...
March 4, 2017

Phyllis and Keven: Polymicrogyria

When Laura wasn’t meeting developmental milestones, Keven and Phyllis brought her their pediatrician. They were shocked to learn that she had polymicrogyria. Over the years they realized what an absolute joy to Laura was to have in their family. Losing a Child Twice Getting Diagnosed with Polymicrogyria Phyllis, Laura’s mother, was suspicious of something being wrong with her. Phyllis recalled, “When she was about three of four months old, we went to the doctor because she wasn’t progressing. Sh...
March 3, 2017

Jen and John: Encephalocele

Jen and John were encouraged by medical professionals to abort Jackson after he was diagnosed with encephalocele. They chose to carry him to term and thrilled they did. Jackson is now a thriving two year old who is proving doctors don’t always know best. Proving medical professionals wrong The worst birthday ever Jen and John went in for an ultrasound on John’s birthday. After the ultrasound tech was acting weird Jen recalled, “I just kept asking ‘is everything okay?’ She was acting quiet and ju...
March 2, 2017

Kimberly and Bobby: VACTERL or VATER Association

Kimberly and Bobby wanted to take no chances when they found out they were pregnant with their daughter Kyla. They previously had a child who was stillborn after being diagnosed with Trisomy 13 in utero. After receiving normal test results they thought Kyla was going to be just like her older sisters. Kyla was diagnosed with VATER association when she was seven months old. The Happiest Girl Father Notices Abnormalities Kimberly said, “When she was an infant, we noticed right away that something ...
Feb. 22, 2017

Camille and Martin: Seizure Disorder

Martin and Camille have four children. Three of which have a seizure disorder. Camille and Martin were pioneers in getting appropriate services for their children. Camille and Martin were candid about first learning about their children’s seizure disorder and are grateful for them in their lives. Having Multiple Children with a Disability Being born with no issues Camille explained that all three of her children were born presenting no issues. Around five to seven months, is when they started ha...
Feb. 20, 2017

Shirell and Danny: Prader-Willi Syndrome

Shirell and Danny have a 15 year old boy named Sam, who has Prader-Willi syndrome. When Sam was first born, Shirell and Danny noticed that he was floppy and looked lifeless, and the doctors discovered his issues right away. For Shirell and Danny the joys have definitely outweighed the hardships.
Feb. 19, 2017

Kecia and Kris: 3 Children with Down Syndrome

Kecia and Kris were excited for the birth of their third daughter Brie. When she was born, they discovered that she had Down syndrome. The news was difficult for Kecia and Kris to process. 10 years later, they have realized how amazing Down syndrome is. They have adopted two children with Down syndrome from the Ukraine. Choosing Down Syndrome Down Syndrome Diagnosis Brings Emotional Response Kecia recalled when Brie was born. She said, “I had her via C-section, and I didn’t think anything of it...
Feb. 18, 2017

McKenzie: Diaphragmatic Hernia, Cystic Hygroma, and Renal Agenesis

McKenzie anxiously anticipated the birth of her second child. She hoped this child could serve as a buddy for her first child, Trevor, who has Down syndrome. Unfortunately, she found out that Maely had several abnormalities and would die before, during or after birth. Her story is touching as she explained her decision to carry Maely to term. Carrying to Term Despite Fatal Diagnosis Everything seemed to be okay When their first child was born with Down syndrome they were shocked! McKenzie was yo...
Feb. 17, 2017

Mindy and Chris: Spina Bifida, Hydrocephalus, and Club Foot

Chris and Mindy were expecting their fourth child and went in for a routine ultrasound. Everything seemed great until their doctor called them later that night. He said that their son, Camden, had spina bifida, hydrocephalus, and clubfeet. They were given the option of abortion several times. They chose to carry Camden to term and are grateful they did. Enjoying the Ride Whirlwind of News Mindy shared when they first learned their son, Camden, was going to be born with some abnormalities. She ...
Feb. 15, 2017

Janeen- A Grandma’s Perspective: Lissencephaly

Janeen is the proud grandparent of Hunter, a 10 year old boy who was diagnosed with lissencephaly. Janeen was candid about her experience with Hunter and the joy he has brought into her life and his family’s life. A Grandma’s Love Four-month-old diagnosed with lissencephaly Even though Hunter wasn’t officially diagnosed until he was four months old, Janeen said that when he was born they suspected that something was wrong. She recalled, “He didn’t hold his head quite right, he couldn’t nurse, a...
Feb. 13, 2017

Sydney and Darren: Alobar Holoprosencephaly

Sydney and Darren courageously chose life despite being told that their daughter had a fatal condition. Grace was diagnosed with alobar holoprosencephaly. She lived for five and a half hours and greatly impacted those around her. Finding Beauty in Your Baby’s Death Your baby is going to die When they had their 20-week ultrasound Darren and Sydney received news that no parent wants to hear. The ultrasound tech said to them, “There’s something that’s a little different, but I don’t know what it i...
Jan. 26, 2017

Amber and Justin: Down Syndrome

Justin and Amber were nervous to welcome their son, Finneas. They learned at an ultrasound that their son would be born with some chromosome disorder. They were told that their son would be a burden and encouraged them to have an abortion. They chose life and are grateful everyday as Finneas, who has Down syndrome, has brought more joy and love into their lives than they could have imagined. Down Syndrome is Pure Joy Something is wrong At 14-weeks pregnant, Amber was experiencing some pain and w...
Jan. 25, 2017

Emily and Bryson: Lissencephaly

Bryson and Emily were thrilled to welcome their first child Hunter. They started noticing that Hunter was falling behind in some of his development. When Hunter started having seizures, they knew something was wrong. He was diagnosed with lissencephaly. Bryson and Emily were candid about what life has been like over the past 10 years. Everyone Has Something to Offer the World Three-month-old has seizures When Hunter was born, Bryson and Emily had no reason to suspect that he was anything but per...