Inspiring Life Despite A Diagnosis

Phyllis and Keven’s youngest daughter, Laura, was not progressing as a typical  three or four month old, so they took her to a specialist and found out Laura  had Polymicrogyria. Phyllis and Kevin were crushed to learn the news. Laura could not walk, talk, or feed herself, but she could light the room with her infectious smile.

Jen was pregnant when she and her husband, John, found out that their baby, named Jackson was diagnosed with Encephalocele. Their doctor, as well as a with a Genetic Counselor, explained that the baby would either terminate itself, or not go full term, or if he lived he would have no quality of life if they continued the pregnancy. Jen and John chose to continue the pregnancy despite the challenges, and are both so glad they followed their hearts. He brings joy to their lives, and even though he has multiple physical differences, he is a happy and delightful child.

Kimberly and Bobby's youngest daughter Kyla, was 7 months old when she was diagnosed with VATER Association. Kyla has spent her entire life thus far, in and out of hospitals and surgeries, addressing and fixing different complications. Kimberly said the hardest part for her is accepting that she doesn’t know what is going to come.

Camille and Martin have four children, and three of them have a medically induce developmental delay. Each of their children were born without complications and had no problems during pregnancy or birth. Their children were typical until they were each 5 to 7 months old, when they started having seizures and were diagnosed with Epilepsy.  A medication used to treat their seizures caused developmental delay, and learning disabilities.

Shirell and Danny have a 15 year old boy named Sam, who has Prader-Willi syndrome. When Sam was first born, Shirell and Danny noticed that he was floppy and looked lifeless, and the doctors discovered his issues right away. For Shirell and Danny the joys  have definitely outweighed the hardships.

Kecia and Kris have five biological children, one of which has Down syndrome. They also have two adopted children with Down syndrome. When their third daughter was born, a few minutes after her arrival they were told she had Down syndrome. Kecia and Kris quickly learned to focus on the things she could and would do, and not the things she couldn’t. Since then, they have opened their hearts and home to two more children with Down syndrome who they have adopted from Ukraine 

Mckenzie had her first child, whom she named Trevor, and he has Down syndrome.  When Mckenzie found out she was pregnant with her second child, Maely Grace, ultrasounds and testing revealed Maely had a Diaphragmatic Hernia, Cystic Hygroma, Renal Agenisis and other issues. Mckenzie was told that with all of Maely’s defects, she would either be stillborn or die shortly after her birth; it was recommended that she terminate the pregnancy. 

Mindy was pregnant with her and Chris’ fourth child when she went in for a routine ultrasound and found out there were many complications. Their baby, Camden, had signs of Spina Bifida, Hydrocephalus, and Club Foot in both feet, as well as Mindy having a placenta previa. Mindy and Chris saw a high-risk doctor that reiterated several times that they had until Mindy was 26 weeks along to abort the baby.

Janeen is the grandmother of Hunter, who was diagnosed with Lissencephaly at four months old. The day Hunter was diagnosed, he had a seizure and was taken to the hospital where he spent several hours having tests done before a diagnosis was confirmed. Janeen describes the most difficult aspect of Hunter’s journey as having to watch the seizures, knowing she cannot do anything to help him. Hunter was only given an estimated five years to live, but is now 10 years old and has changed his family’s lives in ways they did not expect.

Sydney and Darren's baby was diagnosed with Alobar Holoprosencephaly, a condition that is incompatible with life. They were told the baby may not survive the pregnancy, and if she was delivered, wouldn't live very long. They chose to continue the pregnancy in hopes they would get a few minutes with her alive before she passed away. The decision to press forward with the pregancy has impacted all who know them. 

Amber and Justin found out their baby had issues at a 14-week pre-natal checkup. They were strongly encouraged to abort the baby because the doctors thought the baby had either Trisomy 13- Patau syndrome, Trisomy 18- Edwards syndrome, or Trisomy 21-Down syndrome. Their decision was more complicated because Amber has multiple sclerosis. They opted to keep the baby, and little Finneas was born with Down syndrome.

Emily and Bryson have a 10-year-old son named Hunter, who has Lissencephaly. When Hunter was three or four months old, Emily and Bryson noticed he was not developing at a normal pace and then he began having seizures. Emily and Bryson took Hunter to the doctor, where they found out about his diagnosis; they were also told that he would most likely not live very long, maybe two to five years, with eight being the best-case scenario.