Our Story

Olivia was born at 37 weeks weighing just under 4 pounds. We knew that we had a challenging road ahead of us because Olivia wasn’t growing on the normal curve due to a restriction in her umbilical cord, which we discovered right around 20 weeks. At 30 weeks, the restriction became worse, and I was taken to UW Medical Center in Seattle, WA where I was put on bedrest and monitored 24 hours a day until it was safe to deliver. After delivery, she was immediately taken to the Neonatal Intensive Care Unit, where test after test was run to determine if she had a rare genetic syndrome. However, all the tests came back normal. After 21 days in the NICU, Olivia was released and we were left with more questions than answers. Instead of warming up bottles for nighttime and early morning feedings we were hooking her up to a feeding tube and pump because she couldn’t swallow or taking anything by mouth without choking. Fast forward six years and we finally have a formal diagnosis – MED13L. This diagnosis pretty much explains Olivia’s visual impairment, global developmental delays, intellectual delays, her inability to sit up, crawl, talk, her small stature and seizures. Just like her genetic syndrome, Olivia shows us more every day. We’ve learned she isn’t defined by her in abilities, but by her abilities to teach me, my husband and our family what the true meaning of life really is – love, laughter and a lot joy.