Episodes

In this followup interview, Maria shares what life is like with her daughter Serenity, who has been surprising doctors from the minute she was born. Trisomy 18: A Story of Hope The Backstory When we first found Maria, she was close to giving birth. She was encouraged by several doctors to terminate her pregnancy. Maria wanted to give her baby a chance! Maria had this to say about her prenatal journey, “I was choosing life no what the diagnosis was. As long as she had a beating heart, I was to fi...

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 requires blood from the mother. They are then able to differentiate between the fetus’ DNA and the mother’s. While this test is considered to be very accurate, Gerald points out some cautions. “It’s import...

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 girl from China who has Down syndrome. A Big Unique Loving Family The Beginning of a Disability Life When Katy was born, Janalen and Rocky knew something was wrong. Janalen said, “She couldn’t suck, she n...

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 Parents Didn’t Know They were Having Twins Terry and Stacy never had an ultrasound, and were surprised to learn that they were having twins girls! They were expecting one 8-pound baby, but when Sydney w...

Down Syndrome: A Joyful Journey Cathy and Brian found out their child had a possible diagnosis of Down syndrome at her eight-month prenatal ultrasound check, when during the ultrasound the doctor spotted some blockage in his intestines. They were told that one in three babies with this blockage have Down syndrome. The Ultrasound Revealed an Intestinal Blockage During a routine ultrasound the doctors detected an intestinal blockage called duodenal atresia. This meant surgery as soon as Cole was ...

Jessica is a single mom of two boys, Britton and Chewy. Britton was born at 28 weeks gestation weighing only two pounds and 14 ounces. He is 13 years old now and has had many health challenges, including a stroke and brain bleed which resulted in Traumatic Brain Injury (TBI). Traumatic Brain Injury: The Britton Experience A Rough Start When Britton was born he was in the NICU for 3 weeks, he had some minor complications but overall seemed to be doing well. Jessica was able to take him home, whe...

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 needs. But in some situations, these women are also dealing with abuse in their relationships privately. Anne, founder of Betrayal Trauma Recovery, states, “A lot of people see the disability from the...

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 Turned Their World Upside Down- in a Good Way Ultrasound Reveals Baby’s Legs are Short Nikki and Sean went in for the routine 20-week ultrasound. At the end of 45 minutes the technician stated, “The baby...

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 Momma Ultrasound Reveals Several Abnormalities “During the ultrasound, I was in shock,” said Natalie. “I thought ‘there is no way I’m strong enough to handle this. I can’t do this. I felt trapped and afrai...

Adrianne and Jason had two biological daughters and an adopted son when they adopted and their daughter Maria from the Philippines. Maria was born missing all 4 limbs, a condition known as Tetra Amelia syndrome. Tetra Amelia syndrome: Exceeding Expectations Adoption After a rough second pregnancy Adrianne and Jason decided they wanted to adopt to complete their family. They have adopted two children from the Philippines. Their daughter, Maria was born missing all four of her limbs. Upon first se...

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 Wrong Luxton’s doctors knew there was something wrong right off the bat. However, no one really knew what it was. “He couldn’t breathe on his own, they called a code blue.” Jori recalls. She continues b...

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 would ask questions at the doctor and say “so do we need to have him tested for anything?” it was always “no, at this point he’s still doing very well he’s just behind and he is receiving all of the ser...

Katherine and Jeff have two daughters with Ellis-Van Creveld syndrome– which is considered to be a fatal form of Dwarfism. To everyone’s surprise, not only did both girls live after birth, but they are now thriving and, living joy-filled lives- nothing like what experts predicted. Katherine and Jeff share their amazing story, filled with joy and hope. Find the original episode here Katherine and Jeff: Ellis-Van Creveld syndrome Living One Day at a Time The Doctors were Wrong Twice Arabella, Kath...

Maria is a toddler with Down syndrome, she was adopted by Sarah and Jeremy. Before deciding to adopt, they had four sons. Their four boys absolutely love Maria. She is a blessing in their lives and they encourage others to adopt if they can. Turning Fear of Adoption into Faith Choosing Down Syndrome It took Sarah and Jeremy many years to decide it was the right time to bring Maria into their family. She is from Yerevan Armenia. They had always wanted the opportunity to adopt, but family circumst...

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 parents had no idea he had any complications, Morgan then shared this “He was life-flighted at 6 weeks and we were told that he had only a 75% chance to live.” Doctors explained that they would most likely be ...

When we first met with Tamara and Matthew they were 30 weeks pregnant with Greyson. Now Greyson is a thriving 18 month old who has brought more joy to their lives than they thought was possible. Paradigm Shift NIPT Saved His Life While some people argue that the NIPT is a basis for some to have an abortion, Tamara, credits the test to saving Greyson’s life. She said, “We’re lucky we took the prenatal test..that test saved his life because we wouldn’t have known that there was a possibility that...

Jennifer and James have a very unique family, they have 10 children! 6 of them have been adopted and 4 or those adopted have disabilities. They each have brought love and joy into their family. Internationally Adopted Children with Disabilities The Unexpected Jennifer and James went to Kazakhstan to adopt their daughter. They were unaware at the time that she has autism and other medical issues as a result of living in an orphanage. Jennifer recalled “She ended up with Reye syndrome and came hom...

Rebekah and Chris both have achondroplasia or dwarfism. They have two amazing children, a son who is typical and a daughter Ella who also has achondroplasia. Even though she is small, she is making a big impact in her family. Little but Mighty: A Story of Dwarfism Planning for the Baby Rebekah and Chris knew they had a chance of their children having achondroplasia or dwarfism like them. When Rebekah was pregnant with her second child they did an amniocentesis. This is a genetic test done using ...

Emmy is an incredible little girl with Pfeiffer syndrome. She’s already overcome many obstacles in her short 5 months of being alive. Exceeding Expectations 20 Week Scan Reveals Abnormalities Amanda found out that Emmy had some abnormalities at the 20 week ultrasound. She recalls, “I’m an older mother, so we had all the DNA testing for all the different things that they test for, and all that came back completely normal..watching the technician go over and over the same areas, and we just knew i...

Typical of that time era, David and his wife were encouraged to place their daughter, Sharmi, who had Down syndrome in a state institution. They chose to keep Sharmi at home. A decision David is grateful for. Sharmi’s sister, Valerie, eventually became her guardian. Valerie recalled what a joy it was to have Sharmi in her life. Choosing to Keep Her Home Doctors paint a grim prognosis When David and his wife found out that their daughter had Down syndrome, they were told, “She’s not going to be a...

Gwen is the mother of Claire and Lola, teenagers with asparagine synthetase deficiency or ASNS. Both Claire and Lola have microcephaly as a result of ASNS. Despite this, they have filled their family and community with love. Finding Happiness and Joy The Unexpected For Gwen and her husband, there was no cause for concern while starting their family. They had one boy, born typically. Gwen’s tests and scans all came back normal during her second pregnancy as well. However, when Claire was born, it...

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 Even though Kenai was born five weeks early and weighed only three pounds, his parents had no reason to believe he would be anything but typical. However, when he was less than 24 hours old, a nurse tol...

Piper is a vivacious little girl with spina bifida. She surpassed the doctors’ expectations even before she was born in an in utero surgery. High-Risk Surgery Before She Was Born “I Had a Feeling that Something Wasn’t Right” During her 16 week ultrasound, Nicole noticed the technician acting cautious. She said, “During the ultrasound, the technician was asking me a lot of questions about my health. It seemed like she was taking a lot of pictures of the fetus..she said ‘you need to need with the...

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 True When Auni was around three months old, her parents noticed that something was wrong. They took her in for a physical therapy evaluation. However, along the way, they did their own research and wer...