“When you have a child living with a disability, one of the most impactful messages we have heard—and one we want to echo—is: meet them where they are.”
Hayden’s Story
Hayden experienced a healthy pregnancy and was born full term at 41 weeks on July 4, 2024. What was meant to be a celebration quickly turned into a search for his stability. His delivery immediately revealed signs of trauma during his descent. He appeared bruised in the face and showed early signs of low muscle tone. Shortly after birth, he began making a high-pitched wheezing sound while breathing, which caught the attention of a nurse. She quickly connected us with a respiratory therapist, and within hours, we were transferred to the NICU at Randall Children’s Hospital in Portland, Oregon.
We spent five weeks in the NICU trying to uncover what felt like an invisible cause behind his symptoms. Each symptom was met with supportive care: his breathing was supported by CPAP and later by low-flow oxygen. A CT scan of his lungs showed no significant findings to explain why he was struggling to breathe. Due to low muscle tone and an inability to breastfeed, he required a feeding tube until he was able to drink from a bottle at around three weeks old—taking only a few ounces over the course of an hour. With very little energy, he slept most hours around the clock. Additional testing included blood work, an EKG (heart), EEG (brain activity), and an MRI, all in an effort to identify the source of his inability to manage on his own. As we approached the end of his fifth week, Hayden began to stabilize enough for us to feel confident caring for him at home. We were discharged with oxygen support, which continued for an additional four weeks. Although we left the NICU without answers, we left with hope—believing he was recovering from what was thought to be a traumatic entry into the world.
Signs of developmental delay appeared early. Hayden is our third child, so as parents, we had an intuition that something more significant was affecting his ability to thrive beyond a traumatic birth. With the guidance of our trusted primary care provider and their supportive staff, we began building a team of specialists to address Hayden’s health concerns. His care team soon included a neurologist, geneticist, and physical therapist. At the direction of our geneticist, we proceeded with genetic testing known as the Invitae Exome Trio. Six weeks later, in March of 2025, when Hayden was nine months old, we received his diagnosis: PURA Syndrome.
After Diagnosis…
As many do after receiving a diagnosis, we turned to the internet in search of answers. What we found only raised more questions about Hayden’s future with this rare genetic condition that affects neurodevelopment. Learning that your child’s condition may result in significant intellectual disability, speech impairment, and severe motor delays brings emotions that are difficult to put into words. We are learning to live for today and to let Hayden’s development lead the way, rather than focusing on assumptions about what the future may hold.
When you have a child living with a disability, one of the most impactful messages we have heard—and one we want to echo—is: meet them where they are.
Hayden has inspired us not only to meet him where he is in his developmental journey, but also to bring others along with us. We are connecting and building relationships within our community, and knowing we are not alone in this diagnosis has become a powerful source of support. Whether you are family, friends, or community members, you are part of our story, and we thank you for being here with us.
McKenzie + Hayden
