Newlyweds Stephanie and Andy were elated to find out that Stephanie was pregnant. During an ultrasound, their daughter Grace was diagnosed with Anencephaly- a condition that is incompatible with life. Doctors told them if Grace made it to term, she probably wouldn’t make it through her birth. They told them if she made it through the birth, she would only live a few minutes.

Although Stephanie and Andy were devastated, they made the most of her pregnancy- not knowing how long they had with their daughter. Grace made it to birth- and lived 10 hours and 32 minutes.

Stephanie and Andy have used their experience to help others, and have created the nonprofit organization Carrying To Term. Which offers support, resources, and tools to the medical community, parents, friends, and relatives.

When Cora and Trey’s twins were missing some developmental milestones, they asked to be referred to a genetic specialist. Through genetic testing, both girls were diagnosed with Rett syndrome– a very rare chromosomal mutation that effects motor, neurological, and behavioral issues among others. There are only 8 other sets of twins with Rett syndrome in the United States.

After Sandra’s twins were born, they noticed one of the twins, Tony, wasn’t developing typically. Through testing, they discovered several brain abnormalities, heart abnormalities, vision, behavioral, feeding, and many more complications. Sandra’s genetic team told her it was unique to Tony- but Sandra thought differently. Tony went undiagnosed until he was six years old- but through some major research and dedication from Sandra, she found a genetic research study, and Tony was subsequently diagnosed with ADNP syndrome.

While Jessica was pregnant with her son Griffin, she and her husband Johnny were informed he had a heart complication- Tetralogy of Fallot. It wasn’t until Griffin was born that they realized there were further complications. Griffin has been diagnosed with Goldenhar syndrome. He has scoliosis, facial differences, heart complications, and a limb difference. Griffin is very proud of who he is, he is extremely positive, and advocates for himself.

During a 24 week ultrasound Jessie and Nathan were told that their unborn son, Ammon, had a heart condition as well as clubfoot in both feet. After they met with a specialist, and were encouraged to abort their son. They choose to continue with the pregnancy and Ammon was unexpectedly born with several other conditions. Despite all of this, he has enriched their lives with his happy personality.

Genie had extensive genetic testing while pregnant with her son Rowland. The tests showed nothing abnormal. Very shortly after birth, Genie and other specialist noticed some abnormalities. It wasn’t until Rowland was 4 years old that he received a diagnosis- ADNP syndrome.

Immediately after Gina’s daughter Larkin was born, Gina could tell she had Down syndrome. When Larkin was 10 weeks old, she was diagnosed with Spinal Muscular Atrophy Type 1, which is the most severe type. Gina says one of the hardest things is not being able to give her other children as much attention. Larkin is now 12 years old, and is the only known person to have lived with both Down syndrome and SMA.

Kaitlin had an average pregnancy, and delivery. Shorty after Mason was born, Kaitlin was told by doctors that he had “dysmorphic features.” He has a deletion of two separate chromosomes, 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.

Kellie was 3 1/2 years old when her twin sisters were born. Both twins were born with Spastic Quadriplegic Cerebral Palsy, and required total care. Kellie opens up about her life as a sibling to sisters that require so much care.