I am beyond grateful to be running the 2024 Boston Marathon on the Miles for Miracles team, for a patient & family that I have been supporting for the past 6 months as a Child Life Specialist.
Meet Owen.
“Owen is our miraculous 12 month old who has defied every odd stacked against him. He was born at 35 weeks weighing 1.3 kgs and while Owen has been inpatient at Boston Children’s Hospital since he was just a few minutes old, his incredible care journey at BCH began while he was in utero.
Owen’s mom and dad received his diagnosis in the second trimester of their pregnancy. Through several fetal MRIs at Children’s, they were able to closely monitor Owen’s growth and prepare for his needs once he arrived earth-side. An extensive team of specialists came together well before his arrival to ensure they were ready to treat him and give him the best chance of survival.
Owen has a rare autosomal recessive disease that has life threatening implications when not treated and managed extensively. He is the first in the world to be diagnosed prenatally, and only the 22nd reported case in the history of the condition. Because he is the first in so many ways, Owen is a trailblazer for future patients and continues to test out revolutionary technology and robust care plans.
Owen’s strength was apparent from the very start. He was whisked away to his first surgery at only 3 minutes old and has gone on to have four more major surgeries and countless diagnostic and exploratory interventions.
Now, at 12 months old, Owen is thriving in ways his family and caregivers only dreamed were possible. He is often considered the mayor of whatever unit he visits and has a fan following throughout the hospital. He shows everyone what it means to persevere against all odds, and is the truest example of what children are capable of when provided world class care.”
Every dollar I raise funds the very best medical care, breakthrough research and vital support services for kids like Owen. Thank you for your support!