Finding a Place in the World
As a baby "W" was absolutely adorable. He was really chubby and so calm and sweet. "W" never did babble much. He would, however, repeat the same sounds over and over again in his crib as I recall.
A Perfectly Beautiful World
Claira was born on a gorgeous Sunday morning with the sweetest smile and the biggest blue eyes you have ever seen. Just like any typical family, we were extremely happy and proud of our little baby girl. When she was 3 months old the storm clouds started rolling in.
A Purpose Driven Life
Eleanor is our spunky, loving, and creative four years old. She was diagnosed with SYNGAP 1 at the end of August 2016, following the results of Whole Exome Sequencing through Children's Hospital in St. Paul, MN.
Finding the Normal Button
At 2, we knew something was going on with our little Payton. She wasn’t talking as much as her sister. It took her almost 17 months to walk. We always called her our quiet child. During this time, we started looking into tests and procedures to uncover what was happening with Payton—beginning with the pediatric doctor and neurologist, genetics, and metabolic.
Our Journey to a SYNGAP1 Diagnosis
Ena was born on 20.02.2011. My happiness knew no bounds; I thanked God for giving me her because I was desperate to have children. The childbirth has passed without problems; my little one received a score of 9.
Meet Lizzy- My Miracle
She started getting fevers when she was three weeks old. Her first struggle with pneumonia was terrifying, but we got through it. At six weeks old, she developed RSV, which is very dangerous; we also got through that. She had a sensitive stomach and developed gastric reflux.
Big J’s Journey
John was quiet in the womb. Induced birth due to a pregnancy condition, making John possible to die any time after 37 weeks; he was already 39 weeks. John had a quiet cry, didn’t fuss, had a healthy weight, and loved being cuddled and content.
Shopping for Syndromes
At around four months of age, I noticed that Sammy sometimes did not reach and grasp things as expected and stared into space.
Finding Hope
Our story of a child waiting for eight years and then this birth, which we finally give the joy to being parents. We do not know how one becomes a parent; you learn to be – our instinct guides us this far.