I am proud to share with you that I’ve been selected to run the 2025 London Marathon on April 27th as part of the Boston Children’s Hospital Miles for Miracles Team. 

I am running for my son Jack! 

Jack was born three weeks premature (37 weeks) on July 18, 2015, with many physical complications around his skin, hair, overlapping fingers, rocker bottom feet and contractures of his arms and legs.  He spent the first 30 days in the NICU at Beth Israel in Boston where we worked closely with Geneticists to determine the cause of his condition. Trisomy and Microarray testing proved indeterminate. 

We then worked with the Geneticists at Children’s Hospital in Boston. Advanced genetic testing called Whole Exome Sequencing was completed and the testing confirmed that Jack has a genetic mutation of the ERCC2 gene called triothiodystrophy, or TTD, and a mutation of SC2NA which makes him prone to seizures.  The odds of being born with TTD are one in one million and there are currently only 100 known cases worldwide.  Some of the symptoms include UV sensitivity, vision and hearing loss, feeding issues, stunted growth, contractures, and developmental delays.  Jack was non- verbal and non-mobile but that didn’t stop him from lighting up a room with his giggles.

It is Children’s Hospital that I want to continue to thank.  They have given me an avenue to give back to such a special place that did so much for my family during the hardest event I have ever experienced.  This is the best way I have found to say thank you to Jack’s doctors, nurses and staff that cared for and loved him. 

Jack’s last Christmas was at Children’s Hospital and one of our nurses had her family drive in from Burlington Ma to the hospital to deliver Christmas dinner to us while we watched over Jack.  Hoping for one more miracle for our baby boy!  Jack has been gone for nearly 6 years and not a day goes by that I don’t think of him.  It warms my heart and brings a smile every time I share his story.  I look forward to sharing his story over and over again on this winter’s journey, training for London.

I would like to thank you in advance for your generous love and support as we work towards the research and resources required to understand and take care of these beautiful children. Children’s Hospital’s Vision is “until every child is well” and I too believe this to be true and am honored to be a part of this remarkable journey!