Episodes

Jennifer was 10 years old when her sister Vanessa was born with Down syndrome. Having a sister with Down syndrome has had a profound impact in Jennifer’s life for good. A Sister’s View of Down Syndrome: She’s Amazing! Not Understanding What Down Syndrome Was Jennifer was 10 years old when her sister Vanessa was born. She remembers being at a relative’s home when they got a phone call saying that her little sister was born. “I just remember my dad called me and said there is something different a...

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 genuine. He is always concerned about his parents and siblings. He is sees the world simply, and it doesn't take a lot to make Tyson happy.

Stephanie has an older brother named Mick. Mick has autism and epilepsy that requires him to be under constant supervision. Stephanie opened up and shared some of the struggles she felt growing up having a sibling with a disability. She has come to terms with Mick’s diagnosis and how it has impacted her life. Embracing Who You Are Realizing your brother is different Most siblings who are close in age will attend the same school. For Stephanie, this was one clue that made her realize her brother ...

Jace was seven years old when he was diagnosed with Cockayne syndrome type one, which is a very rare genetic condition, and is fatal. His mother, Valorie, became his champion and has started a non-profit organization called Team Jace to help other families walking the path of having a child with disabilities. Cockayne Syndrome: A Rare Genetic Condition Getting a Diagnosis “Type one children are normally born pretty healthy and develop normally until they are about a year old, and then they start...

Nathan has a twin brother, Nick, who has MPS or mucopolysaccharidoses, type 2. He shares his story as a sibling with a brother who has a disability. A Sibling Story What is MPS? “My brother Nick has something called MPS or mucopolysaccharidoses, type 2. MPS is a lysosomal storage disorder, a genetic condition that only affects boys,” said Nathan. Nick is missing an enzyme that breaks down sugars in his body. This affects the nervous system, heart and all other systems in his body. “Nick is 19, i...

Summer found out during an ultrasound at 20 weeks gestation that her son, Aires, had anencephaly and if he made it to term and was born, he would only live a few hours. Summer and her husband opted to have their son and to cherish him for as long as he lived. Anencephaly: A Journey of Love The doctor came in and his eyes were full of tears Summer had taken her two other children with her to her ultrasound appointment with plans to do something fun together afterward. She had told her husband n...

After Brenna was born, Courtney and her husband found out Brenna had Harlequin ichthyosis, a rare genetic condition affecting the skin. Harlequin Ichthyosis: A Journey of Love Baby is born a month early Brenna was born about a month early, just before Christmas. “When she was born, the doctor placed her on my chest like they usually do, and there was this shocked silence in the room,” said Courtney, Brenna’s mother. “My husband almost fainted, he was so surprised by her appearance. It was immedi...

At their 20-week ultrasound Brittany and Tyler found out their son would be born with multiple medical issues including hydrocephalus, encephalocele and amniotic band syndrome. Gaining a Grander Perspective Parents are excited about their 20-week ultrasound Brittany and Tyler were looking forward to their 20-week ultrasound. They had an ultrasound at 16 weeks and found out they were having a boy, whom they named Max. “We were so excited. We struggled for years to conceive, and we had a miscarri...

Will is the youngest of four children. His older sister has Down syndrome and he has two brothers on opposite ends of the autism spectrum. This has given him a unique perspective on people with disabilities. A Sibling Story: A Unique Perspective “All Three of My Older Siblings Have Disabilities” Will is the youngest of four children and all three of his older siblings have disabilities. His sister has Down syndrome and he has two brothers with autism, one high functioning and one low functioning...

Maria and Brandon discovered during an ultrasound that their unborn son had a cleft palate. A more detailed ultrasound and genetic testing revealed their son has chromosome deletion 9Q. Chromosome Deletion 9Q: A Very Rare Condition Being unique in the world At an ultrasound performed at 12 weeks gestation, Maria found out that her unborn son had a cleft palate. An umbilical abnormality was found in a follow-up ultrasound. Genetic testing was recommended but testing was limited due to miscarriag...

Lacey and her husband found out about possible facial differences in her son, Christian, through an ultrasound. At birth he was diagnosed with Tessier cleft or frontalnasal dysplasia. Tessier Cleft: The Challenge of Facial Differences Abnormal Ultrasound Shocks Parents As it happens frequently, Lacey and her husband found out about possible problems with her unborn child during a routine ultrasound. “We went in for our anatomy scan, mostly concerned with finding out whether he was a boy or a gir...

Kelly and Zac anticipated the arrival of their baby boy with excitement. Nothing had led them to believe that he would be anything but a healthy baby. When he was a few weeks old, they received a diagnosis of achondroplasia. They shared their experience in coming to terms with the diagnosis and how their relationship with God helped them love and accept Everett for who he is. Fear Turns into Gratitude Unexpected news Throughout her pregnancy, Kelly, never had any indication that Everett would be...

When Kim was 18 weeks pregnant, the doctors discovered some abnormalities with Jackie, her baby. After Jackie was born, it was discovered that she has CHARGE syndrome. Despite enduring six major surgeries before reaching age two, Jackie has brought joy and love to Kim’s life. Overcoming Challenges to Find Joy Discovering more than the gender at an ultrasound Kim went to her 18 week ultrasound expecting to find the gender of her baby. It was there that doctors informed her there were some abnorma...

Megan and Josh weren’t expecting their son Edison to have Apert syndrome or hydrocephalus. Now at three-years-old, Edison has brought continuous joy into their lives. He has endured numerous surgeries and has many more in his future. Megan and Josh were candid in sharing their experience. Apert Syndrome Creates Joy in Family Born looking different Megan recalled the first moment she realized that something might be wrong with Edison. She said, “The second they laid him on my check after he was b...

Kierra went into her 20-week ultrasound expecting to find out the gender of her baby. She instead was told that Evanna, her baby, had a severe heart defect. Now at the age of three-years-old, Evanna is deeply loved by her parents who are thrilled to have her as their daughter. Finding Joy in a Terminal Diagnosis 20-Week Ultrasound Reveals Heart Defect During their 20-week detailed ultrasound, the ultrasound tech discovered a major heart defect for Kierra’s baby. A week later, they were given a f...

A routine prenatal ultrasound showed Katherine’s baby had shorter limbs than was typical. Baby Arabella was misdiagnosed with fatal disorders twice while in utero. Katherine and Jeff refused to terminate the pregnancy. It wasn’t until she was born that they got an official diagnosis of Ellis-Van Creveld syndrome. Arabella is now a beautiful 2-year-old who has touched many lives. Carrying on despite two fatal diagnoses Fatal Misdiagnosis At their 18 week ultrasound, Katherine and Jeff were expect...

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. Happiness That Comes From Down Syndrome Older parents have child with Down syndrome “We were both older when we got pregnant; I was 44 and my husband was 50, and as a result of that, we were referred to ...

During her pregnancy, Lauricia had several indications that her son, Zacchaeus, would be born with some abnormalities. After birth, Zacchaeus was diagnosed with Cornelia de Lange syndrome, a rare gene mutation. Lauricia and her family have been blessed to have Zacchaeus in their lives. Finding Joy in Uncertainty Associated With a Rare Diagnosis Knowing something is wrong with your child At first, Lauricia was told that her baby was measuring a little smaller than usual. However, as the pregnancy...

Deborah and Kent experienced the worst nightmare a parent could have. Their two-year-old daughter was miraculously brought back to life after drowning. As a result, Heather lives with a traumatic brain injury. The last 34 years haven’t been easy for Deborah and Kent but they have been worth it. Turning Tragedy into Miracles Events leading to the traumatic brain injury On a Fall day, Deborah and Kent’s four-year-old daughter ran into the house to tell them that Heather had fallen into a ditch and...

During her first prenatal ultrasound, Angie was told that her daughter wasn’t developing properly. She was encouraged to terminate her pregnancy after testing revealed nothing. Now 12 years later, Ruby has blessed Angie’s life and has inspired others with her joyful personality. Recognizing Every Child Has Something to Give The World Unnamed rare genetic condition During her pregnancy, Angie had an amniocentesis performed to understand what was going on with Ruby. Her head was measuring smaller ...

Mandy and Steven already knew they were expecting a boy for their fifth child when they went to their 20-week ultrasound. They didn’t know however, that their baby had multiple issues that would result in him dying a few hours after he was born. Despite being encouraged twice to terminate, they chose life and are grateful they did. Miracles Can Happen Finding out your baby is going to die At 16 weeks, Mandy and Steven decided to pay and have an ultrasound that would tell them the gender of their...

Tori and Matt were starting to become concerned when their nine-month-old daughter wasn’t meeting her developmental milestones. After some testing, it was discovered that Lana had cerebral palsy caused by CMV in-utero. Tori and Matt share what a joy Lana has been in their lives. Congenital Virus Causes Disability Nine-month-old not reaching milestones Tori recalls when Lana was nine months old. She said, “..she hadn’t sat up or rolled over or anything. That’s when we realized this is more than j...

Throughout the second half of her pregnancy, Casey grieved the diagnosis of her future son. Owen was diagnosed with a limb difference. Something Casey and her husband weren’t expecting. Now 10 months later, they recognize the positive impact Owen has had on their lives. Receiving the Best Gift Ever 20-week ultrasound reveals limb difference Up until their 20-week ultrasound, Casey had a perfectly uneventful pregnancy. She expected for the only news that day to be the gender of her baby. She rec...

As soon as Kimber was born, it was apparent that something was wrong. She slept through shots, bathing, and a blood draw. No one was able to determine what was wrong. They only gave Kimber six months to live. Luckily, the doctor’s were wrong. Kimber is now a fun four year old who has since been diagnosed with Prader-Willi syndrome. Fighting for What You Love Baby slept constantly Alyssa, Kimber’s mom, described Kimber as a “rag doll”. She explained that for the first week of her life, Kimber sle...