Inspiring life despite a diagnosis

Brittney and Derik share what SHINE syndrome is and how it has made an impact in their life. Their daughter has been a joy in their life despite some of the difficulties that come when having a child with SHINE syndrome.

When Matt was only 3 hours old, Wendy was told he had Down syndrome. When we asked her how she felt receiving that news she told us, "I think I every emotion known, I was going through. I experienced shock, fear, trauma, devastation, anger. I thought, what did I do? Why me? I was afraid that my life had just been ruined'

During a routine ultrasound, Madison and Ty found there was something was wrong with their baby boy. When they went to the specialist, they were told their baby’s bladder was large, and his kidneys were covered in cysts and had little to no function- a condition that is incompatible with life. Devastated, Madison thought about the possibility of carrying their son as long

First signs something was wrong Erika and Steve first noticed something was different with their son Blaise when he was 18 months old. Erika recalled, “He went to daycare and we would go in and notice that all the kids are playing in one area and he's over to an area by himself. He always did individual play.” That wasn't the only thing she noticed. She shared that one of

utero something was wrong and were candid about their worries and stress. When Hadley was born all of that changed.

for good. She is a fierce advocate by paving the way for future research to help others who may receive the same diagnosis.

Matthew has three very rare abnormalities. He has been diagnosed with Goldenhar syndrome, agenesis of the corpus callosum, and an extra copy of his 78N22 chromosome. Now at 12 years old, Regan, Matthew's mom, shares her experience with Matthew so far.

Dani and her family fought hard to receive an official diagnosis for her daughter Hayden. After many specialists they finally received a diagnosis of DDX3X. So rare that there that at that time there were less than 500 people that have ever been diagnosed with this genetic deletion.

Carrie was only 22 years old when she received the unexpected news that her son, Luke, was born with several disabilities. She lived far away from family, and single was single.

Wrayanne was a first time mom when she learned her daughter, Morgan, was born with a rare severe epileptic seizure disorder. Wrayanne was candid about her struggles and her hopes for Morgan’s future.