I am proud to join the Boston Children's Hospital/Miles for Miracles Marathon team again to run the 2025 Boston marathon in memory of William and to raise awareness of Long QT Syndrome.
This year I am fundraising for the Inherited Cardiac Arrhythmias department at BCH. This means that every dollar I raise goes directly to the incredible team that took care of William, helped us find answers, helped us understand Long QT, provided genetic testing to multiple family members, and continues to treat affected family members. I am thankful for the opportunity to give back to this incredible team and raise awareness of this rare condition.
After losing William, the BCH team continued to search for answers. Genetic workup revealed that he had a rare inherited condition called Long QT Syndrome (LQTS). This condition affects the heart's electrical rhythm and can result in an arrhythmia and sudden cardiac arrest.
Since William's diagnosis we have continued to work closely with the Inherited Arrhythmia Program at Boston Children's to identify and treat other affected family members. We are so grateful for the care they have provided to us.
I run in honor of our sweet William. I run to raise awareness for LQTS and other inherited cardiac arrhythmias. I run to help kids at Boston Children's Hospital find lifesaving care, and give families hope.
For more information on Long QT Syndrome please visit:
https://www.childrenshospital.org/conditions/long-qt-syndrome
