Inspiring life despite a diagnosis

Austin is a six year old boy who has Down syndrome.  His parents, Tiffany and TJ, share what a joy he is in their lives and to their families.  Tiffany and TJ are heavily involved in their local Down syndrome association which brings awareness and inclusion to their community. Down Syndrome: An Amazing World “I Knew He Did” Immediately after Tiffany and TJ’s son Austin was born, Tiffany...

Georgia and Nick first started noticing signs their son Lincoln was regressing developmentally.  After getting diagnosed with Autism Spectrum Disorder , they share their joys and struggles coming to terms with his diagnosis.  Winning the Lottery “That was the moment I knew something was up” Lincoln was a year and a half and was excelling in his speech.  As he got older, he started l...

Stephanie and Andy were recently married when they found out Stephanie was pregnant.  Having planned the pregnancy, they were extremely excited for the arrival of their baby girl.  However, Grace was diagnosed with acrania anencephaly, a terminal diagnosis. In honor of her legacy they launched a company to help others navigate a terminal diagnosis called, Carrying to Term . Not Letting a...

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 When Charlie and Olivia were young, their parents were suspicious something was wrong.  Cora said, “...

It took six years for Sandra to receive a diagnosis for her son Tony.  He was diagnosed with ADNP syndrome and was the 11th person to be diagnosed.  With little information available, Sandra set out to create more awareness for her son’s extremely rare disability.  Ten years later, she has helped find a genetic file marker for ADNP, started a non-profit organization, and created a F...

When Jessica was pregnant with Griffin, they discovered a heart abnormality.  It wasn’t until after he was born they discovered he had several other abnormalities. Despite these challenges, Griffin is a rock star and has proven to his family and others he is happy with who he is. Taking a Deep Breath Goldenhar syndrome After Griffin was born the room went silent.  The doctors notic...

When Jessie was 24-weeks pregnant with Ammon, the doctor noticed he had clubbed feet and abnormalities with his heart. After an amniocentesis, Ammon was diagnosed with DiGeorge syndrome.   At seven-months-old, he is bringing joy into the lives of Jessie, Nathan and many others who meet him. Joy and Happiness Despite the Struggles 24-week ultrasound revealed abnormalities When Jessie and Natha...

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 extensive testing done.  She said, “My husband and I had some genetic testing done...

When Gina delivered Larkin, after seeing her, she knew immediately that she had Down syndrome.  It wasn’t until Larkin was a few months old that they realized she had some other abnormalities as well. Unicorn Down Syndrome Gina shared her experience in finding out her daughter, Larkin had Down syndrome.  She said, “I had her via C-section, and my doctor showed her to me over the little drape; I kn...

Shortly after Mason was born, Kaitlin was told by doctors that he had “dysmorphic features.” Mason’s main diagnosis is a deletion of two separate chromosomes. He also has complications such as a congenital heart defect, congestive heart failure, microcephaly, auditory neuropathy, and many others. Despite the challenges, he is the light of his family’s life. Living With an Unofficial Diagnosis Posi...

Kellie was three-and-a-half years old when her twin sisters were born. Both twins were born with spastic quadriplegic cerebral palsy and required total care. Kellie was candid in sharing her thoughts and feelings growing up with her sisters.  Growing up different Noticing your sisters are different At three-and-a-half years old, Kellie wasn’t too aware her twin sisters were born different.&#1...

Jacob was diagnosed in utero with a large cyst forming on the back of his brain.  Nicole, Jacob’s mother, was given the choice of termination. She chose life and Jacob has blessed her family’s life and continues to bring joy to everyone he meets. The Only One in the World Finding out your son is different “When I was pregnant with Jacob, we found during one of the ultrasounds that there was a...

Ann gave birth to beautiful identical girls.  When they were only a few hours old, they noticed something might be different with them.  They were later diagnosed as having spastic quadriplegic cerebral palsy . Ann shares her journey in fighting for her daughters lives and how they have been a blessing to her family. Twins with Spastic Quadriplegic Cerebral Palsy Twin girls started havin...

Nikki and Alan were shocked to learn that their fifth child was born with Down syndrome. After accepting Will’s diagnosis, Alan used his photography skills to create Will Can Fly.  A nationally recognized Calendar where proceeds go to helping people with Down syndrome. At only four years old, Will is inspiring others and bringing joy to his family’s life. Will Can Fly Shocked to learn your ch...

At the time of his diagnosis, Parker was the 85th case person to be diagnosed with ADNP syndrome .  He has a rare genetic condition that can cause a variety of different abnormalities.  Kayla and Josh talked about their journey towards finding a diagnosis and what life has been like with Parker.   Rare Diagnosis Brings Joy and Love for Parents Baby missing developmental milestones Early in his lif...

Laura and Devin had only been married for three years when Laura’s youngest sister, Annie, came to live with them.  Annie has Down syndrome and was 13 years old when her mother passed away. Laura and Devin share the positive impact Annie has had on their family and their lives by living with them. Sister Turned Guardian  Growing up with a sister with a disability Laura was eight years ol...

Jaden was born with spina bifida myelomeningocele and was only a few weeks old when he was placed into the foster care system.  Ryann became his foster mom and then legally adopted Jaden when he was almost two years old. He has blessed his family’s life and spreads love and acceptance wherever he goes. Finding a Forever Family Bringing a child home with spina bifida Ryann shared her journey t...

When Sunflower was three days old, she was adopted by Mercedes and Andy.  She has Down syndrome and brings light and joy into her family’s life. Andy and Mercedes share their story of what led them to adoption and how Sunflower has impacted their lives. Adopting a Child With Down Syndrome Choosing Adoption After Experiencing Loss Mercedes and Andy had been married for three years when they found o...

Connie was devastated to learn that her daughter, Farah, was diagnosed with cerebral palsy , cognitive impairment with a seizure disorder .  Farah is now 41 years old and has had a profound impact on her family, community and all who meet her. The Impact of One Person Finding out your child has multiple diagnoses When Farah was six months old, she was officially diagnosed with cerebral palsy and c...

After several miscarriages, Courtney and John adopted Bella as a newborn. Bella showed signs early on as someone who had autism , but these symptoms were only recognized in hindsight. Since receiving an autism disorder and a mood disorder diagnoses, Bella has made great strides. Now she is often described as a delightful person. An Autism and Adoption Journey A series of miscarriages leads to adop...

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 weeks old when she developed a fever and her parents, Katie and Eric, took her to the emergen...

Lacey found out at a 28-week ultrasound that one of the twins she was carrying had a problem with his brain. They weren’t able to diagnose syntelencephaly and partial agenesis of the corpus callosum until after the birth of her son, Tell. Taking a Different Path: The Journey of Syntelencephaly   Heart Problem is Suspected During an Ultrasound “I was pregnant with twins, and at 20 weeks...

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...

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...

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...