Inspiring life despite a diagnosis

Erick found out shortly after birth that his daughter Erika has Down syndrome. Erick believes that Erika has made him a better, more patient person and parent. Finding out your daughter has Down syndrome Erick didn’t find out about her diagnosis until after she was born. Erick said, “Maybe five minutes in. I remember the doctor, she actually said “I don’t know but it seems like your daughter might have Down syndrome. I have a feeling from what I’m seeing.” My reaction was “okay, she can be wron

Daniel and his wife spent 11.5 years of their life devoted to taking care of their son Lucas. Lucas had a very rare condition called Menkes disease. Despite being total care, Lucas brought love, joy and happiness to their family. Menkes syndrome: Daniel’s Story What is Menkes disease? Menkes disease is a disorder that affects copper levels in the body. Menkes disease is characterized by sparse, kinky hair which is known to break easily, failure to thrive, seizures and deterioration of the nervo

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. SHINE syndrome: Brittney and Derik’s Story What is SHINE syndrome? SHINE syndrome stands for sleep disturbances, hypotonia, intellectual disabilities, neurological delays, and epilepsy. There are only 150 known cases world wide, making the disability extremely rare. Brittney,

When Wendy first found out that she had a son with Down syndrome she was devastated. She felt as if her life was over and didn’t know what life would look like for their future. 32 years later she now realizes how great her life is with her son Matt in it. My life is ruined When Matt was 3 hours old, Wendy recalls her experience, “Yeah well so a lot of emotions, a ton of emotions. I think every emotion known was going through. I experienced um shock, fear, trauma, devastation, anger, what did I

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 as she could, so they could donate his organs. They learned to qualify for organ donation, he had to be carried to 36 weeks’

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 the most telling signs that something was wrong was when she dropped Blaise off at daycare. The other children would cry fo