Kinsley : Diagnosis Won’t Define Her

Danielle’s condition impacts every part of her life. She likely has a reduced life expectancy, and I know I’ll miss milestones most parents expect, like her going to college or getting married. My goal is simply to help her live as healthy a life as possible.

Davis is such a happy, sweet boy. He is the strongest person I’ve ever known. His accomplishments may look different than others, but he has had to work so much harder for every single one. We are incredibly proud of him.

Learn what rare genetic diseases in children mean for families, including Lissencephaly, Sanfilippo & Leigh Syndrome, plus support resources for caregivers.

As the weeks went on, more symptoms began to appear. Serenity started having seizures that stopped her breathing every few minutes. That’s when I knew she was suffering, and we were faced with the hardest decision we’ve ever had to make. We never wanted this outcome, but we knew it was coming. And when the…

We worked hard to become heart defect experts—something we never imagined we would need to do. We had barely heard of congenital heart defects before this, yet they are the most common birth defect, affecting about 1% of the population. At first, we were terrified, but over time we learned to accept this new reality.

After everything happened, samples from Amari’s umbilical cord were sent for testing. It took just over six months to receive the results. That’s when we finally received a diagnosis: Walker-Warburg Syndrome, an extremely rare and severe form of muscular dystrophy that affects the brain and eyes. Only about 1 in 100,000 babies are born alive…

I love having memories from OAW that show how far my daughter and I have come. Having a support system outside of doctors and nurses—one filled with families who understand the emotional juggling that comes with raising a child with special needs—has been invaluable. I love meeting other moms and families at gatherings. Seeing a…

We can’t do big outings with huge crowds, which means no public Santa photos in order to keep Wyatt safe. Then OAW started offering private 1-1 photo shoots with Santa for our family. Seeing our kids light up with joy when they see Santa just makes me so emotional. OAW gives families like ours normalcy…

“Working with these children for a whole dedicated day helped reinvigorate my drive for this mission,” Cramer said. “This is the work we are meant to be doing. Meeting a child in the deepest part of their emotions and giving them a safe place to reveal them is no small task. It creates a deep…

It’s hard to imagine a life without the perspective and hope that stillbirth has brought me. And it’s even harder to imagine a life where I never got to love my son — even if it was only for a moment.