I will be participating in the Boston Children's Hospital Yoga Reaches Out Yogathon this spring in memory of our sweet Noah Jeffrey.
Access to quality care for the children and families of our community has been a cause I’ve supported my entire adult life; never would I have ever imagined just how close to my heart this cause would become following the birth of our youngest child, Noah. Halfway into the second trimester of my pregnancy, an incidental finding on ultrasound revealed the suspicion of a congenital heart defect. Upon birth the presence of a defect was confirmed with unclear indications as to what to expect moving forward; the plan was to watch and wait- words no parent wants to hear while discussing the outlook of their child’s health. Driving Noah’s heart defect was a genetic mutation, news which would not be discovered until 3 weeks into our NICU journey and just further complicated the trajectory of his care.
In early December of 2021, we had gone in for our monthly follow up with Noah’s cardiologist at Tufts Floating to learn his condition had since progressed and warranted a referral to a subspecialty group at Children’s Hospital. Upon meeting with a pediatric genetic cardiologist, we learned Noah had not one, but two separate gene mutations being expressed in his pathophysiology; each of which acting on the same pathways of the heart. Just how these mutations would affect each other for certain remained unclear, as none of the cardiologists in the group had ever seen the two together, making Noah’s circumstance incredibly rare. Less than 2 weeks following that appointment, Noah experienced the sudden cardiac event that would take his life, he was just 3 months old.
On April 10, I'll join more than 1,400 participants at Gillette Stadium for an inspirational day of yoga, music, and fundraising - all to bring lifesaving answers and hope to the most complex children from around the world, children like Noah.
- give children battling the most complex diseases treatments they can't find anywhere else;
- help children in your town and those across the world get a second chance;
- fuel 3,000+ researchers working to find cures;
- help patient-families in crisis with urgent needs, including housing, food and clothing;
- bring crucial care to families through not 1, but 4 outpatient psychiatry clinics;
- provide reiki, yoga and a safe place to simply exhale for families facing the stress of caring for a critically-ill child;
- and so much more.