Both of their daughters were diagnosed in utero with a fatal form of Dwarfism. They chose to continue with the pregnancy, and doctors couldn’t give them statistics, because everyone else they knew that received the same diagnosis chose to abort.
Congenital Heart Defect: Latest Post
Katherine and Jeff: Ellis-Van Creveld Syndrome- Update
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...
Congenital Heart Defect
Sandra: ADNP Syndrome
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...
Jessica and Johnny: Goldenhar Syndrome
Griffin is a young boy with Goldenhar syndrome. He is proud of who he is! His positive attitude helps his parents not view his diagnosis as a bad thing.
Jessie and Nathan: DiGeorge Syndrome
Baby Ammon was diagnosed with DiGeorge syndrome and numerous other abnormalities. His parents are grateful he is here despite the difficulties.
Kaitlin: Chromosome Deletion
Mason has a long list of medical complexities including a double chromosome deletion. Despite his many medical challenges, he is a light for his family.
Kayla and Josh: ANDP Syndrome
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...
Brittany and Tyler: Hydrocephalus, Encephalocele, Amniotic Band syndrome
Max was born with numerous medical complications involving his heart and brain. His short life brought his parents much joy and peace.
Kim: CHARGE Syndrome
When Jackie was diagnosed with CHARGE syndrome, her mom was overwhelmed by all of her impairments. Since then, she’s learned to enjoy every day with her.
Kierra: DiGeorge Syndrome
Evanna was born with DiGeorge syndrome. A 400-day hospital stay wasn’t easy for her parents but it strengthened their marriage and love for their daughter.
Katherine and Jeff: Ellis-Van Creveld syndrome
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...
Maria: Currently Pregnant with a Fetal Diagnosis of Trisomy 18 or Edwards Syndrome
When Maria received the news that her daughter, Serenity Grace, had Trisomy 18 or Edwards syndrome, she was strongly encouraged to abort. Instead Maria moved closer to find better resources that would suit the needs of her delivery. She shared her journey...