Mila

Mila came into our world the day after her due date on September 9, 2012 following a “typical” pregnancy/no complications. Immediately, however, we noticed she was hard to soothe and to nurse. Within a few months, our pediatrician suggested genetic testing, and our journey into a sense of anxiety, isolation, but ultimately, rich community had…

Annie

Annie has a twin brother named Buck. They were born pre-maturely, at 31 weeks gestation. Both came into the world very small, but as they grew, a disparity became apparent between the two in terms of their rate of development. At the age of 3, Annie was diagnosed as having the DDX3X gene mutation. While…

Emelyn Grace

We welcomed Emelyn to our family in March of 2013. She’s about the most laid-back child you’ll ever meet with a giggle that will bring a smile to anyone’s face. Whether it’s splashing in the bathtub, paddling around the pool, or simply washing her hands, Emelyn is happiest when she’s around water. Out of water,…

Kate

Kate was born on October 9, 2008 after an uneventful pregnancy. Early on she had a terrible time sleeping, abnormal cry and was unable to keep down feedings. We were referred to a specialist when Kate was six months old and were told that she didn’t “look like a normal baby.” As each birthday passed,…

Lena

Our lovely Lena was born in May 2014. She was happy and healthy, other than being diagnosed with microcephaly. At her 4 month checkup we were referred to a developmental pediatrician. That began a year of test after test, endless doctor visits, and many sleepless nights. We finally got her diagnosis in November 2015. We…

Braylee

Braylee was born February 2, 2014. Pregnancy was normal, but she decided to make her appearance at 36 weeks. She spent 3 weeks in the NICU due to failure to thrive, low blood sugar, breathing abnormalities and two different CHDs. She had open heart surgery at 2 months old, but that didn’t “fix” our sweet…