It is an honor to announce I will be running the 2025 Boston Marathon for Boston Children’s Hospital!
Boston Children’s Hospital is held very dear to our hearts. Our son Michael was born with Lobar Holoprosencephaly. Holoprosencephaly ( HPE) is a congenital brain disorder caused by a failure of an embryo’s forebrain to divide to form a bilateral cerebral hemisphere (the left and right halves of the brain). This failure to divide causes defects both in the brain structure and function, resulting in a wide range of mental and physical limitations. It also causes mild to severe defects in the midline structures of the body and face, especially the eyes, nose, lips, and palate. Current studies indicate that only 3% of all fetuses with HPE will survive to delivery and the vast majority of these infants do not survive past six months of life. Michael is our miracle.
Receiving a diagnosis like HPE is heartbreaking and terrifying. We are so grateful to live so close to such an amazing hospital. The entire BCH community came together to support not just Michael but our entire family.
Since birth, Michael has had 14 specialists, 4 surgeries, and multiple hospital stays at BCH. From the outstanding medical care to the child life specialists, the family center, the gardens, visiting therapy dogs, I could go on and on. We were able to get a grasp on what Michael’s needs would be and the best ways to support him and our family.
We could never fully express how deeply grateful we are for BCH. To have been given the opportunity to not only run the Boston Marathon with Michael as my patient partner but also to have the chance to raise money and give back a fraction of what we have received to help aid the care of other children and families is an absolute honor.
Thank you for taking the time to read our story and for any contribution, big or small to the hospital that has given us so much. Your donation will go directly to helping other families like ours receive life-changing care. Every step that I take will be a tribute to Michael and his incredible journey, and to all the families who find themselves on similar paths.
